Justin's battle with Lemierre's Syndrome

Exciting things going on!!

2012-01-31T11:02:00.000-06:00

We were approached by a LS Survivor to be a part of his companies fundraiser this year! Every year this man's employer holds a fundraiser event and donates all the proceeds to a charitable organization and this year they chose us!!! We will be flying to PA Feb 17th to accept the check! This is the 2nd company to approach us to be a part of their fundraiser! HOPEFULLY there will be more to come, I'm really excited about it because we have a pretty huge project coming up that needs some serious funds in order to pull it off! We are going to have a meeting in Feb to discuss fundraising opportunities in the very near future!
After our meeting I will be able to tell you what our new project is!!

If you think your company would like to hold an event or help us with our fundraisers let me know! OR if you have any questions about how to hold a fundraiser or need ideas in what to do email me. sunflwz2@yahoo.com

I really appreciate all everyone has done to help us! Hopefully this will be our next step into getting people all around the US and then some to hold fundraisers to help us and our project. We WILL succeed in getting the word out about this disease as well as diagnosing and treating it faster so no one has to suffer the pain as we and so many other families have!

xoxoxoxo
Tammy

Sweet Caroline

2012-01-12T21:54:00.001-06:00

Prayers needed for a sweet little 3 year old - Caroline. She is battling Lemierres and was in a drug induced comma in Fleming Island, FL! I know my brother is watching over her and her Dr's right now!

Caroline we are all praying for you! xoxoxoxoxo

http://www.caringbridge.org/visit/carolinekneisley/journal

Looks like she is doing a little better today.

Lemierre's was on HOUSE!!!!

2011-11-07T22:34:00.002-06:00

I can not believe I missed it. Now that I have 4 VERY active kids I never get to sit and watch TV. I learned from Stephanie Dean that Lemierre's was shown on House tonight!!! I am super excited but super bummed that I missed it.
You can watch episodes that are 8 days old on their website so it looks like next Tues I will be watching House on my computer!! I remember when we emailed them asking to add Lemierre's to their story line because it is such a strange unknown about disease!
I believe it is the episode called "Confessions" I do not think he ends up having Lemierre's but atleast it is mentioned!

xoxoxox
Tammy

Happy 21st Birthday!

2011-09-28T21:45:00.002-05:00

Happy 21st birthday little brother!
I hope you celebrated big in Heaven today! Kristiana was blowing you kisses while we were at your grave site. Cruz said he remembers wrestling with you and I told him so do I. Except I remember getting mad at you for getting the boys all hyped up. Kristiana yells at me "MOM do not get mad at my Uncle Justin! He loves you and you should love him too an be happy, not mad at him!" ha-ahaha-aha
I told her I do love you, I love you and miss you very much, but I did get so frustrated with you when you made Allen and Cruz all hyper. ;0)
They love you and miss you as much as I do. They say they talk to you and they hope you hear them.
Antonio is my mini Justin. I hope he doesn't give me as much trouble as you did mom and dad. ;0)
Justin the Bee we love you and miss you.
I'm sure your embarrassed hearing that nick name.
Love your oldest sister,
Tammy

Snow Camp infant lives with rare disease | snow, camp, disease - Burlington Times News

2011-04-06T09:51:00.000-05:00

Snow Camp infant lives with rare disease snow, camp, disease - Burlington Times News

4 month old baby with Lemierre's

2011-04-06T09:47:00.002-05:00

I received this article today via email! Crazy!!! Poor little guy! Makes me a little sad that his Dr. told his mom and dad not to look the disease up online because it would scare them. I'm so glad he is doing better. Sounds like he has a ways to go before he is 100% fully recovered. He defiantly has my prayers! Love, Tammy

Libraries

2011-03-10T14:35:00.002-06:00

I just created a letter to mail out to all Hospital Libraries in the US. I found a website this afternoon with every address for Hospital Libraries all over the US. I will start printing the letters and get it out to them asap. Letters that go to these Hospitals my not get into the hands of Doctors but it will help teach the Public more about this disease and it will help family and friends of those that have already been diagnosed with it and teach them what lies ahead and that there is hope.
I hope all is well with everyone! Thank you for your continued support.

Love,
Tammy

Mystery Diagnosis Reminder

2011-01-25T22:23:00.002-06:00

Tomorrow is the day!!! I can't wait to see Michael and his family on TV!

I am so happy they chose them to do the show about. Michael has been through so much! He is such a strong young man and I hope one day I get the opportunity to meet him and his wonderful family!

Lemierre's will be featured on Mystery Diagnosis Wed. evening 8/7c. I hope everyone gets a chance to watch!!! If not you can always visit their site

www.health.discovery.com/tv/mistery-diagnosis/

We will be having our watching party here at our house. As Justin's niece Kristiana says, "Mommy, you got my popcorns?" ;0)

I have had so many families reach out to us and tell us their story and how grateful they are to our site and all we do. THANK YOU!!! I love hearing that we are making a difference! I have started researching CME departments. They will be my next contact. From what I know they are the ones that hold educational classes and lectures and keep the Dr's up to date on all information!

So you better believe they need a letter form us!

love to all,

Tammy

Lemierre's on Mystery Diagnosis

2011-01-11T11:03:00.003-06:00

I just received word from Sherrill (Michael's mom)~
The taping they did on Michael and his long battle with Lemierre's will air on Mystery Diagnosis on Wed. Jan. 26th! This will be their 4th episode of the new year! Their show will be aired on "OWN" Oprah's new network!
TO see what channel it is in your area or on your TV go to www.oprah.com/own/channel_finder.html

Mystery Diagnosis
Wed 8/7c

This is very exciting! I hope everyone gets to watch it!
Love to all
Tammy Valencia

Singapore

2010-12-30T22:55:00.000-06:00

This just posted out of Singapore:
SINGAPORE: If you have a sore throat, coupled with neck pain, giddiness and a fever that doesn't go away, you should see a doctor immediately. You may be suffering from the "Lemierre's syndrome" which is rare and potentially lethal.Experts said, there have been fewer than 10 such cases in Singapore over the past 10 years. But this month alone, two cases have been reported.One of the patients was 32-year-old Vincent Leo.He thought it was just the flu when he had a sore throat and fever two weeks ago. But when he did not get better, he saw a doctor and found out that he had Lemierre's."I kept vomiting and having diarrhoea at night. My left side of my face swelled up a little too. It was even painful to eat and drink," said Mr Leo.Dr Jagadesan Raghuram, Chief and Senior Consultant of the Department of Respiratory Medicine with Changi General Hospital, said: "The common bacteria that we have in our oral cavity usually causes this disease...some of these bacteria for one reason or another becomes pathogenic, meaning they invade, and become a cause of the disease."What it does is the bacteria, apart from causing local problems like gum disease or local cavities...it can actually spread through the tissues in the oral cavity into the neck...the bacteria that causes this infection actually causes inflammation in the surrounding vessels of the neck."And the bacteria can actually seep to other organs like the lung, liver, kidneys, spleen. And if the infection is not controlled or treated aggressively, upfront, this can cause organ failure and death."Dr Raghuram said the disease affects young adults between 20 and 40 years old. Treatment includes a four-week course of antibiotics. For the first two weeks, the patient needs to take the antibiotic intravenously in hospital followed by another two weeks orally. Antibiotic treatment can be stretched to six weeks where needed.He added that patients are also treated with blood-thinners for three to six months because the disease usually involves blood clots in the veins. Dr Raghuram said medical records show that only one patient here has died from the disease. He said the rare disease occurs in about only one in every 1.25 million people.

Happy Thanksgiving!

2010-11-24T20:14:00.002-06:00

What I am thankful for..... I know I am very thankful for all the love, support and prays from people that have never even met us in the past 2 years. I'm thankful for all of the young adults that have done or will do research papers on this disease in their classes. As well as for all the people helping us spread the word of this disease and helping us teach Dr's by asking their Dr. if they have ever heard of it. I'm thankful for all of the people that stop me or any other member of my family or firends and ask them what Lemierre's is. I'm thankful for my 4 beautiful, healthy & amazing kids. I'm thankful for my family and friends especially for my husband who supports me in everything I do. I am very thankful for the relationship I have with my mother, father, sister and brother as well as the rest of my family. I am soo thankful I got to share 17 great years with my little brother, even though we all wish it were longer and we miss him so much. I'm grateful that he lives on through my children, they remind me so much of him.
I know we have taught hundreds if not thousands of people about this disease and there are still hundreds of thousands more! If anyone reading this is on facebook look us up we are on there as well. Share our link and become our friend. Help us pass the word of this disease. I still read articles from reporters and people saying how rare this disease is. When you look into it and read all of our comments on this page as well as our other site www.lemierresyndrome.com you'll see how untrue that really is. This disease use to be rare. It is making a huge come back in our world.
I am especially thankful to everyone that reads or follows this blog and shares it with everyone they know.
Much Love,
Tammy

This sat!!

2010-10-21T15:01:00.002-05:00

Paintball Fundraiser is this Sat!!

I just went and bought all the food!
it's 11:30 - 3:00 (games start at 12)
must be at least 10 yr old to play. If under 18 you must either have a parent with you or a notarized waiver ( I have one I can email to you)

$20 includes all your equipment, a t shirt, lunch, drinks and a $5.00 off coupon to pasta house!
Now that's a deal!
Come hang out with us even if your not into paintball!
The Crux
(Wellspring Wesleyan Church)
2396 Highway A
Washington MO, 63090

Food available for those not paintballing at a CHEAP price!
Suppose to rain a little but don't let that stop you from coming out!

Happy Birthday Soilder Boy!!

2010-09-28T21:06:00.002-05:00

Happy 20th Birthday Justin!!
I had another dream about you the other day!! I was so excited to see you and you didn't understand why? I just kept hugging you and I wouldn't let go! You were so embarrassed! It's weird because the dreams I have of other people it is them but it's either not their face or I can only see from the chest down. In the 3 dreams I've had about you or that you've come to visit me in it has been your face and every detail about you has been right. But every time I wake up for about 5 min I'm so happy I got to see you again but then I realize how mean that was!!! I get to see you for a few moments and then you're gone! Today on the way home I was changing stations on the radio and I heard this song that caught my ear. It was so pretty (I know you don't like pretty songs) it was all about what that person would want if they died to soon. It was actually a very strange song but it made me think of you and some how it made me feel like I was meant to hear it today at that exact moment! The name of the song is "If I Die Young" by The Band Perry. I know you're here everyday with us. Antonio was outside today (it was a absolutely beautiful day) and he kept looking up at the sky like he saw something I thought maybe it was a bird but honestly nothing was there. I've always heard that babies and small kids see things we don't. I swear when he stare at the ceiling or into my eyes I look soo hard to see if I see your reflection! Cruz has a lot of your facial expressions and definitely your attitude. Allen was so excited to get your guitar for his birthday. He really misses you! We all do! Kristiana is such a smart pretty little girl she knows exactly who you are! I told Allen and Cruz that have to tell Antonio and her all about you when they get older!I hope you had a great birthday in Heaven today!
Love you,
Tammy (your older yet shorter sister!)

How about a game of Paintball!?!?!?

2010-09-22T13:18:00.004-05:00

We are going to try a new type of fundraiser!
Something I know my little brother would enjoy if he were still here with us!
Something that all his friends will enjoy and we can all afford!
Something that any age can participate in and have a blast!

Saturday Oct. 23rd is going to be our first Paintball Tournament!

It will be held at the paintball fields at
The Crux in Washington MO,
(which is the same location as Wellspring Wesleyan Church park in their parking lot & walk behind the building)
2396 Highway A
This is about 25 min. from Eureka

Time is 11:30-3pm

There will be food & drinks available, all paintball participates will receive lunch at no extra cost, all others will be able to purchase food for a small price. Drinks will be provided for everyone with no charge.

The minimum age to play is 10, if you are under 18 you MUST have a waiver filled out and signed by your parent or guardian in order to participate. If your parents will not be with you the waiver MUST be notarized or you will not be able to play!!! This is a very strict rule there is no getting around it. Email Tammy @ sunflwz2@yahoo.com and she will send you the waiver to have filled out. If your parent will be with you there is no need to fill one out ahead of time we will have them there.

Invite ANYONE you like!!!
Go to http://www.facebook.com/#!/event.php?eid=151559128209396&ref=ts
YOU MUST BE LOGGED INTO FACEBOOK BEFORE YOU CAN GO TO THAT PAGE.
and let us know if you will be able to attend, if you click on "Select guests to invite" on that page you can invite everyone from you friends group to come as well!!
We need to make sure we have enough food for everyone so please RSVP, ASAP! The paintball field can only hold up to 60 people so RSVP NOW! I already have 10 people saying they will play. You can RSVP by emailing Tammy or doing so on the facebook page for this event.

I took my 11 year old son here a few weeks ago & all the paint came out of his shirt in the wash! Here is what they say about what to wear and what everyone will get.
"Participants may bring their own paintball guns and/or mask, but for safety reasons everyone must use our paintballs. Please encourage everyone to wear shoes with long socks and long pants. Long sleeve shirts or sweatshirts are also encouraged but not required. We have masks, chest/back protectors, and neck protectors available at no additional cost. The rental guns we provide are Tippman 98s."

It hurts when you get hit by these so come prepared!

So how much does this cost? I'm sure your asking...
It is $20 per person and that includes
*3 hours of play
*500 paintballs
*A Mask
*Gun
*Chest & back protector
*Lunch
*Drinks
*$5.00 off coupon to Pasta House
*And a Lemierre's T shirt with my brother's pretty little face on it!! ;0)

Please get ahold of us and let us know if you plan on coming!! You can also comment on this post and let me know as well.
Alcohol is not allowed at this event!
Below are the rules of the facility, we must follow them remember they are helping us to raise money for our cause and letting us use their items!!!

Thank you!!
Tammy Valencia

General rules
1. All participants must be registered with a signed liability waiver. For participants under age 18, liability waivers must be signed by a legal guardian.
2. Children age 10 and under must be accompanied by an adult at all times
3. The Crux is not responsible for participants’ lost, stolen, or damaged personal property – keep up with your stuff.
4. No Fighting – (we prosecute fighting)
5. No Verbal Abuse including, but not limited to: profanity, name-calling, or racial, ethnic, and/or religious slurs will be tolerated under any circumstances.
6. No weapons allowed on property
7. No illegal drugs or alcohol allowed on the property. (we prosecute illegal drug possession) Anyone using or under the influence of alcohol or any other substance will be ejected from the property. Repeat violators will be banned from the facility permanently.
8. Smoking is only allowed in designated areas – (main porch and parking lot)

Paintball
1. SAFETY GOGGLES must be worn by anyone in the playing field and target range at all times. Only Goggles meeting ASTM guidelines for
paintball with full-face and ear protection are allowed. Modifications are strictly prohibited. Neck and chest guards are provided at no charge
and recommended.
2. NO SHOOTING in any areas other than the designated playing field and/or target range. No shooting into or out of the registration area,
neutral zones, or parking area or at houses, or automobiles. Markers may only be discharged on the active field of play or target range. DO
NOT SHOOT OVER OR AROUND THE NET!
3. NO BLIND SHOOTING
4. ALL JUDGE’S DECISIONS ARE FINAL. Players or spectators will not be allowed to argue with the referees under any circumstances.
5. BARREL BLOCKING DEVICES must be used at all times in every area of the property other than the designated playing field and target
range. Barrel blocking devices must be specifically designed and manufactured for paintball markers.
6. NO CLIMBING on trees, vehicles, or any structure 4’ or higher.
7. NO PHYSICAL CONTACT between players or with judging officials.
8. NO CONSTRUCTION OF BOOBY TRAPS
9. NO UNAUTHORIZED EQUIPMENT or potentially dangerous gear is allowed. All firearms, knives, machetes, paint mines, etc. are strictly
prohibited. The field operator must approve all equipment prior to use.
10. PROPERTY & EQUIPMENT MODIFICATIONS ARE PROHIBITED. Players are not allowed to modify safety goggles, rental markers,
bunkers, or any property on the premises.
11. SPECTATORS are required to wear safety goggles unless they remain a minimum of five feet behind the safety netting at all times. No
exceptions.
12. TANK-FILLS players are not allowed to perform tank-fills (no exceptions).
13. LEAVE WILDLIFE ALONE do not shoot at, handle, or in any way harass wildlife.
14. VELOCITY SETTINGS ARE STRICTLY ENFORCED all velocity settings must remain at or below 260 (fps)

Exciting stuff going on!!

2010-08-13T13:51:00.002-05:00

There are some exciting things going on in the life of Lemierre's Awareness!!!

About a month ago I received an email from the casting producer for "Mystery Diagnosis." They are very interested in producing a show on Lemierre's!!! And then Thursday I received a email from Dr. Centor saying the Study has been approved!!!

The University of Alabama at Birmingham is conducting a study of Lemierre’s Syndrome focusing on the duration of symptoms prior to hospitalization, length of stay, and cost of care. If you are 15 or older and have a history of Lemierre’s or are the parent of someone with a history of Lemierre’s please click here to participate.
Study entry process - http://www.medrants.com/lemierre-study/study-entry-process
For a preview of the consent form: http://www.medrants.com/lemierre-study/consent-form
For a brief description of the study - http://www.medrants.com/lemierre-study

Fundraiser in Romeoville IL

2010-05-11T11:31:00.002-05:00

I have added a flyer to the side of this website to announce a fundraiser taking place in Romeoville IL to help out Chris (CJ) Schwarz. Please check it out and if you live in that area stop by to help them raise some money for their hospital bills. They are also going to send us a portion of the profits of this fundraiser! Here is what the flyer says!

Have You Ever Heard of Lemierre’s Syndrome?
Neither had any of us…
The friends and family of Chris (CJ) Schwarz are holding a Benefit/Fundraiser to help with extraordinary medical costs incurred from his battle with this disease.

We have also chosen to donate a portion of all proceeds from this event to the Justin E Rodgers Foundation. The family of Justin, who was 17 at the time he lost his life to this disease, has created a foundation dedicated to providing information on Lemierre’s to medical and health professionals and facilities as well as the general public, so that
other lives may be saved

Chris (CJ) Schwarz (proud new uncle!)
Chris is a 19 year old former graduate of Romeoville High, he was an RHS Madrigal singer, and a dancer with the Bolingbrook Park District Danceforce for years. He was athletic and healthy when he was diagnosed with a strep throat in February. Within a few days, he was in the hospital ICU and diagnosed with Lemierre’s Syndrome which had already spread to his lungs. After a week long stay, he is currently home under continuing medical care and slowly recovering.
Lemierre’s Syndrome is a rare disease, that is becoming more prevalent. It affects young healthy individuals, generally in their teens and twenties. It is a very fast-moving bacterial infection, that can cause permanent organ damage and death if not diagnosed in time. It can require long-term treatment; and pain and fatigue may continue long after it has been brought under control.

Please come out and help, and get more information on this potential killer.
Enjoy the music of “Junior Terrace Blues Band”. Food will be provided, there will be a cash bar, and we’ll have raffles and drawings to enter. Hope to see you there, and Thank you for your support!

Sunday, May 23RD

Leo’s Bar & Grill

201 E. Romeo Road, Romeoville, IL
1PM - 5PM

Private donations will also be accepted at any Harris Bank location under
Christopher J. Schwarz/ Lemierre Syndrome Fund
Tickets will be available at the door for $15.00 Under the age of 21 - $10.00
Contact Sue Leonard - 815-886-2257 or E-mail: SUEL321@hotmail.com for more information.
You may also purchase tickets ahead of time with the above information.
A very special Thanks to the doctors, nurses and staff at Bolingbrook Adventist Hospital.
Your wonderful care and compassion are greatly appreciated!

Google Alerts

2010-02-24T15:00:00.002-06:00

When my family and I first started this mission I set up a "Google Alert" for the word Lemierre's Syndrome. This simply means anytime that word is posted on the internet I would get an email and a link to the website it was posted to. At first I would get maybe 1 or 2 emails every few weeks. MOST of the time it was junk and some sort of Spam. However, in the past 3 months I have received at least 1 a day. And in the email have been 3 links of 3 different websites that have posted something about Lemierre's. In the past it was 1 or 2 links at the most per email. I believe the word is really starting to spread! I have read 3 news articles and seen 2 stories in the News in the past 2 months. I think people are starting to open their eyes and see that it could be more then just viral. I do believe Dr. Centor has had a lot to do with this!!! A few people have posted comments on here stating they found our site after hearing his lecture. My plan is in March to send out another batch of letters to ER doctors! I'll let you know how it goes!
Thank you to everyone that has shared their story with me!
Love,
Tammy

So many more cases

2010-01-29T10:25:00.002-06:00

I'm not sure if the word is finally getting out or what is going on but in 1 week I had at least 5 cases emailed to me and then today I found a news station that had a story on Leimerre's yesterday.
http://www.9news.com/seenon9news/article.aspx?storyid=131693&catid=509

There have been 2 cases here in St. Louis in the last few months.

Thank you to everyone that shares their story with us and helps us to continue in this battle!
I'm now a stay at home mom which I am very excited about for 2 great reasons!!!
One I get to stay at home and be the full time care giver to my 4 children (well 4 when the newest addition arrives hopefully next week) and two I get to spend more time in this battle and getting the word out about this disease.
I have pamphlets printed up all I have to do is start mailing them to those that have requested them. I would like to have another mailing go out in March for ER doctors. These seem to be the next set of Dr.s that tell the sick "It's viral go home and rest".
Thank you again to everyone!
Love,
Tammy

New article out!

2010-01-03T19:48:00.001-06:00

Here is an article just printed Sat.

http://news.cincinnati.com/apps/pbcs.dll/article?AID=/AB/20100102/NEWS01/1030375/

Hope everyone had a great Christmas and New Years!
Love,
Tammy

Lots more cases

2009-12-07T20:42:00.003-06:00

I have received at least 7 or 8 emails in the past 3 weeks of cases that are all around the US right now. I know that doesn't seem like a lot to some people reading this but that is only 7 or 8 cases of people who found our organization on the Internet! I know there are so many more out there. I receive google alerts for the word "Lemierre's", every time someone posts something about Lemierre's on the Internet. I get a email sent to me of the item that has the word Lemierre's in it. I usually only receive an email every few weeks however in the past week I have received an email everyday and there are 4 to 5 links of articles and other items discussing Lemierre's. 2 of the links I received where from family members stating how their loved one had passed away due to Lemierre's this happening in just the past few weeks. On one of the websites the person posting actually put our web address www.lemierresyndrome.com on the page so everyone could learn more about it!!! I have also received 2 emails from people saying their loved one had passed away in the past 3 to 4 months from this disease. That is 4 people that I have learned about in the past few weeks that have passed away! OUr thoughts and prayers are with all of those families! We know your pain and suffering all to well!
We sent out our first batch of letters to health care places starting with Urgent Cares in Sept. One of the ladies that emailed me had taken her loved one there and they passed away shortly after. It's really sad. The public is listening to us but the Health care people are not just there yet. But we won't give up! I plan on working on the next mailing to send out after the holidays.
To everyone that has contacted me Thank You again!!!
I may not be able to get back to everyone right away but we do appreciate your thoughts, prayers and sharing your stories with us!
Love,
Tammy

Pictures of our walk

2009-11-03T21:14:00.001-06:00

If anyone has pictures they would like to share of our walk please send them to
sunflwz2@yahoo.com
I was unable to take any pictures and would love to post some on our sites!
Thank you!!!

Tammy

Our Walk and other information

2009-11-03T20:36:00.003-06:00

I apologize I have not written anything on here about the walk we had Oct 17th. Unfortunately my family has gone through another horrible situation and lost another loved one. My Grandpa Hill passed away Tues, Oct 27. He left us way too soon.
He fell 2 months ago and hit his head. He was with us for 2 months after the fall but could no longer hold on. My grandpa is one of the strongest and most amazing men I know. I feel truly blessed to have had him in my life for 30 years. Now he can be with his 3 grandchildren including Justin! I know they welcomed him with open arms in Heaven!
Contributions to J.E.R. Foundation for Lemierre's Awareness Inc. www.lemierresyndrome.com appreciated.

The walk is coming up very soon!!

2009-10-06T18:23:00.003-05:00

We will need about 25 volunteers to help make this a big success! The first and most important thing is word of mouth. We need to let everyone know that we are doing this! I would love to have a big crowd. The bigger the better! I have passed out flyers all over Eureka and everywhere I go. We are leaving them at gas stations, banks everywhere! We put up over 40 signs all around Eureka. We will be on Show Me St. Louis News Channel 5 Monday Oct 12th from 3 until 3:30! Help us pass the word around! We have some amazing raffle items and lunch will be provided for every walker that registers. There is no set donation in order to walk or receive lunch or any of the other free items we will have there. We will be walking around Down Town Eureka. There are lots of really nice stores in the area there! Anyone is more then welcome to stop and shop for awhile! Fred Bird will be there from 11 - 12!!! I have give aways from a few companies, we would love to have more companies support our cause! If interested please contact me asap! We are not asking for a fee to set up a table just items to donate to us for the walk.

Thank you to everyone who has supported us!
Love,
Tammy

Happy 19th Birthday Justin

2009-09-28T20:44:00.002-05:00

I couldn't make it to the Cemetery today but I hope you got the gifts mom, dad, Chrissy and Jamie let off for you..
The Golf Tournament we had on Sat was a lot of fun! I hope all the golfers enjoyed themselves even though they did get a little wet! Jamie and Joey were soaked! ;0) I guess that means he was out side the cart a lot longer and sticks at golf! I can not wait to have the Walk here in 3 weeks! It's amazing all the love and support we have been receiving over the last year and half. I hope it continues in our fight! I have received many emails from people letting me know that they believe you and the other ones that have lost their life to this disease have been their child's guardian angle through their battle! We love you and miss you every day!
Love your biggest sister,
Tammy

A GREAT BIG THANK YOU!!!!

2009-09-25T13:48:00.002-05:00

I have to give a great big Thank You to the following companies that have supported our cause and helped our Golf Tournament.

Hustler Conveyor Company for sponsoring a Team for our Tournament!!
http://www.hustler-conveyor.com/

Pasta House for donating 150 $5 off coupons!!!!
http://www.pastahouse.com/

Balloons Over the Rainbow for sponsoring a hole at the tournament!!
http://www.balloonsovertherainbow.com/

Pets & Company for donating a 3 day stay for a pet as a prize at the tournament and sponsoring a hole!!!
http://petsandcompany.net/

Cunnetto House of Pasta for donating 2 dinners for prizes at our tournament!!
http://www.cunetto.com/

U Gas for donating a Gas card for a prize in our tournament!!!
http://www.u-gas.com/

Pegg's Pizza for donating a free pizza as a prize for the tournament!!
http://peggsotb.com/

Golf Discount Superstore, South County for donating a Golf Umbrella as a prize for our tournament!!
http://www.golfdiscountsuperstore.com/golf/

Hager Company for making a donation to us to purchase items for the tournament!!!
http://www.hagerhinge.com/

And of Course Elaine Rosi for letting us be apart of this event!! Thank you Very much!!
http://www.rosiacademy.com/

And Sugar Creek Golf Course for letting us hold our event there and all you have done!

We couldn't have pulled it off with our all of you! I will have a longer lsit to post tomorrow. Thank you again!

Love Tammy

Another article!!

2009-09-25T12:10:00.002-05:00

http://www.currentnewsmagazine.com/files/Download/mva.pdf

Lemierre Syndrome,
The Forgotten Disease,
Making a Comeback threatening our children’s lives
By Debby Kwiecien
Feature Writer

“When tragedy strikes you change,” said Tammy Valencia. “You look at things
differently.” Tammy’s talking about her 17-year-old brother, Justin Rodgers that passed away
May 12, 2008, the day after Mother’s Day. Justin was a junior at Eureka High School that year and he was getting ready to go to the prom when he began feeling ill. His mom took him to the doctor who checked for strep-throat and gave him a z-pac and told him to go home and
rest; he’d be fine. A few days later Justin was still sick; he had flu-like symptoms
and a bad case of sore throat. This time Mom took him to St. Anthony Hospital’s emergency room and they promptly transferred him to Cardinal Glennon Children’s Hospital. By the time
Justin was diagnosed a week later with lemierre syndrome he was on a respirator and in a drug induced coma, running a fever of 107. He began bleeding internally and was placed on an ECMO machine that filters and cleans the blood. Amonth after being hospitalized Justin passed away.
“The doctors think it may have been caused by either a fight that broke his nose or some dental work he’d recently had done,” said Tammy. “But they’re not really sure.” Lemierre Syndrome, the Forgotten Disease, is a fast acting illness with flu-like symptoms, a severe sore throat and high fever [106 or more]. The fusobacteria embeds itself into the jugular vein and when it begins breaking down it spreads into the rest of the body, through the bloodstream, wreaking irreversible havoc, especially on the lungs or kidneys. Prior to 1936 the mortality rate for lemierre syndrome was 96%; after the widespread use of penicillin the disease was virtually wiped out. According to Tammy there have been only 120 cases in the last 100 years; however, in the last 5 to 6 years it is estimated that there will be 1000 cases every 10 to 15 years and today the cases of lemierre’s syndrome have risen to 100 deaths out of 1000 documented cases.
What’s truly sad is that the disease is curable, if diagnosed quickly with a simple throat swab in the doctor’s office and treated accurately with a simple dose of penicillin. Before Justin passed away Tammy began asking questions. She started with her own children’s pediatrician. “He pulled out this huge medical book,” she said. “And, looked it up. There was only one short paragraph about it without much information.”
That spurred Tammy on to find out more and to start blogging [an online journal]
at www.lemierresyndromjrodgers.blogspot.com about what happened to
Justin. She strongly believes that because physicians have been cutting back on the
use of penicillin to treat their patients it is causing this disease to resurface. She and
her family also decided to start the Justin E. Rodgers Foundation for Lemierres
Awareness, Inc., [JRFLA] in order to get the word out to other families about this
life threatening disease that is totally curable. Visit www.lemierresyndrom.com for
more information about the disease.
Tammy has also made it her mission to contact every doctor, every hospital, and
every healthcare facility in the US with information about lemierre syndrome. She
has already mailed out 750 letters to emergent care facilities across the US. She is
on a mission to save lives and does not plan to stop until she has made as many
healthcare professionals aware of this as possible.
The JRFLA has teamed up with Elaine Rosi Academy for Children’s fifth annual
golf tournament to be held Sept. 26, 2009 at the Sugar Creek Golf Course. There
is a 7 a.m. shotgun start, 4-person scramble [$99.95 per golfer] with golf pro shop
awards, cash awarded for first place in multiple flights, prizes for longest drive and
closest to pin, $25,000 hole in one prize, unlimited beer, soda and water, complimentary
grilled lunch buffet, optional skins games for $5 per golfer, raffles and
50/50s. For more information or to sign up call Tammy at 314-566-4970.
JRFLA is also holding a walkathon at Lions Park in Eureka October 17 at 10
a.m. There will be hotdogs and hamburgers available for purchase, anyone is invited
to come and walk and there will be silicone bracelets for sale. Watch the
Current’s Community Calendar for more information. Or visit www.lemierresyndromjrodgers.
blogspot.com for updates.

1st Lemierre's Walk!!!!

2009-09-03T20:26:00.004-05:00

Our first walk EVER will be in Eureka MO on Sat Oct 17th @ 10 am! Put it on your calendars now! ;0)
More details in the near future!
If you have an idea for something pertaining to our walk please email me @
Sunflwz2@yahoo.com
We will defiantly need Volunteers for this one! Thank you to everyone that has helped us!!

The first set of letters are going into the mail tomorrow to ALL of the Urgent Care Centers across the United States!
Next we will work on Physician's and Hospitals!
Thank you to everyone for their love and support!
We couldn't do this with out all of you!
Love,
Tammy

NEW Decals are in

2009-08-15T13:23:00.002-05:00

I ordered new decals that say

"My son's Dr. had never
heard of Lemierre's. Has yours?
www.lemierresyndrome.com"

OR

"My daughter's Dr. had never heard
of Lemierre's. Has your?
www.lemierresyndrome.com"

If you would be interested in one of these decals for you car window or anywhere else please email me your name address and which one you would like and I will pop it in the mail to you.
sunflwz2@yahoo.com
THANK YOU!
Tammy Valencia

THANK YOU TO ALL OUR SUPPORTERS!

2009-08-10T21:01:00.004-05:00

I just have to type up a special "THANK YOU" to everyone that has helped & supported us! We could not continue this fight with out all of you!
I receive at least 5 to 6 emails a WEEK from mom's, dad's, aunt's, uncle's, brother's and sometimes the young people them self that have dealt with this disease! For those Dr.s who say this disease is still rare and only a one in a million change of getting I would like them to contact me. There is no way that is true with all of the emails and stories I receive.
We have received many donations from people all around the world and the people purchasing the ribbons, wrist bands and T shirts are a huge help to!!
We are just at the very beginning of our fight but it is a MUCH needed fight! I can't help but think that there are many more families that have lost their loved ones to this disease and do not even know it! It hides behind so many illnesses and takes so much to diagnose it is insane. You think it's 2009 they know about everything but they don't!
I want to Thank You to these companies that have either donated to us or helped us in any other way! FIRST ONE IS HIDDEN VALLEY in Eureka MO.
When Amity approached us to have the "J-Rod Jam" we were in shock! It turned out to be the best fundraiser I have ever been to! Everyone there especially Amity were amazing!
and at the J-Rod Jam helping us were the following companies:
Monster http://www.monsterenergy.com/
SOKA http://www.sokaskate.com/
Fox Creek Outfitters http://www.foxcreekstl.com/
US Cellular http://www.uscellular.com/
105.7 the point http://www.1057pointthepoint.com/
Z107.7 http://www.z1077.com/
And Kelly Corday with the amazing phone interview on the radio! http://www.y98.com/
Automotive Leasing Corporation also known as Ackerman Auto Plaza http://www.ackermanauto.com/

ALSO a BIG Thank you to Carousel Chocolates www.carousel-chocolates.com
This is my Uncle's company and all his sales from his AMAZING Chocolates goes to our Non Profit.

We have had some great donations for the Golf Tournament and I will list those companies as soon as I have all the information together! Thank you again to everyone!
Because of all the funding we have received so far we are going to start sending letters to EVERY Urgent Care and Doctor office in the United States. I know this disease is WORLD wide but we have to start small. If I take on the whole world I will get too over-whelmed. ;0)
Thank you to Brent!!!! Because of Brent Walquist with Beta Media Group in New York City we now have a Banner with our name and website on it to use at all of our events! Thank you Brent for your donation!
There are so many other people out there helping us Thank you Thank you Thank you!
Dr Robert Centor not only devotes his career to help teach Dr.s about this disease he also supports us as well! Thank you Dr. Centor http://www.medrants.com/ I hope one day we can meet in person!
Love, Tammy

Golf Tournament Sat Sept 26th

2009-07-21T22:01:00.002-05:00

We have all the details for our Golf Tournament!!!

It will be held Sat Sept 26th @ 7:00am, (Shotgun Start) at the Sugar Creek Golf Course in Fenton MO.
There will be Golf Pro Awards, Cash Awards for 1st place in multiple flights, Prizes for longest drive & closest to pin, $25,000 hole in one prize, Unlimited Beer, Soda, Water, A Grilled lunch, Optional Skins game for $5 per golfer, Prize Raffle and 50/50 Raffle all of this for only $99.95.
I have uploaded the information sheet as well as the sign up sheet to the right of this post. Please right click on them and select print picture. Please pass around to every golfer you know. This will be lots of fun and you are helping 2 organizations!
If you would like more information please email me.
sunflwz2@yahoo.com

Thank you!!
Love, Tammy

Happy Father's Day!

2009-06-20T11:20:00.002-05:00

Just wanted to wish all the fathers out there a "Happy Father's Day"! I hope every one has a great relaxing day!

We have a few events that we will begin working on for Sept. First is our first Lemierre's Walk! This will be sometime in the middle of Sept., I'm not 100% sure on the date yet. The next is a Golf Tournament we were asked to be a part of. This will be held Sept 26th at the Sugar Creek Golf Course located near Fenton. This is going to be a fun event for anyone that golfs. There will be great prizes!! Food and drinks included in the price to participate. There will be teams of 4 so if you and 3 your friends want to join in let me know! Or just you we can always pair you up with others. IF you would like a flyer for this event please email me @ sunflwz2@yahoo.com. I will post the flyer for this event on this site as soon as I have it ready. I will begin sending out letters for donations to local stores or businesses for items like bottle waters or anything else they would like to donate to us for these events. If you know of a business or you your self would like to donate please email me @ sunflwz2@yahoo.com. I will make a large banner with all of our supporters names on it. We appreciate everything everyone has done for this Corporation!
Love,
Tammy

lemierresyndrome.com is # 3 !!!!

2009-05-15T15:43:00.003-05:00

I just googled Lemierre Syndrome and out of 20,600 search results our website comes up 3rd!! That's amazing!!!
From what I read on his website Michael has been released from the hospital you can read about his recent surgery @ http://www.prayformichael.com/
Also I have had 2 cases emailed to me this week. One is a 4 yr old boy! I told both of their family's our thoughts and prayers are with them.
I received the short sleeve T Shirts yesterday so they are in and ready to be purchased! ;0)

Thank you everyone!
MUCH LOVE,
Tammy

Happy Mother's Day

2009-05-10T21:18:00.006-05:00

I hope all mothers had a great day today! I hope all children were nice to their moms! ;0)
We went to the cemetery to visit my mom's mom, my 2 sisters Mandy & Ashley and my lil bro Justin. Then we all went back to my house and my sister and I made dinner for everyone.

It is so hard to believe just 1 year ago today Justin's battle ended and our battle began! I feel like this year has gone by so fast however I feel like it has been so long since I've seen or talked to my little brother. It feels like just yesterday I was going to sleep scared out of my mind that my phone was going to ring any min and tell me to come say goodbye. Tonight it has been exactly 1 year since I left the hospital feeling so helpless and scared. And at 2 am it will be exactly 1 year that my mom called and told me it's time. May 12th will always be the happiest day of my life as well as the saddest. It is the day I married my best friend as well as the day (one year later) I lost my little brother.

To me May 12 is my little brother's 1 year anniversary of receiving his wings so I feel privileged to be able to share that special day as my wedding anniversary as well.

We have come so far and met so many people in the last year. We have so much more to do and so many more Dr.'s to teach and get in front of to help us fight this disease. All we can do right now is talk and hand out brochures and teach everyone we know. We have been told by many people that we need to get this in front of Oprah! ;0) That would be amazing if we could catch her eye. Maybe one day we will. Thank you to everyone for helping us along the way! I have had so many people ask me how they can help and all we can do right now is talk talk talk. Pass out brochures, try to get Doctors involved and help us spread the word! Lemierre's Syndrome is what the CDC concider a "Orphan disease"
A disease which has not been "adopted" by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.
An orphan disease may be:
A rare disease. According to US criteria, an orphan disease is one that affects fewer than 200,000 people. (There are more than 5,000 such rare disorders.)
A common disease that has been ignored (such as tuberculosis, cholera, typhoid, and malaria) because it is far more prevalent in developing countries than in the developed world. (www.medterms.com)
I'm not really sure what we can do to get this disease in front of their face and make them see it is coming back and Doctors right now do not know enough about it to stop it.
I have emailed them 4 times in the last few months so maybe if we all shoot an email to them putting Lemierre's in front of their face and make them see we need to teach Doctors about this disease! All we can do is try and it is something that only takes a few min. www.cdc.gov
Thank you!
Love,
Tammy

Another family in mourning

2009-05-01T14:48:00.003-05:00

There has been another loss of a young handsome man by then name of Kegan. His family is now trying to understand what happened as we were just about 1 year ago. From the pictures that I have seen Kegan and Justin had a lot in common. They both were so young and so full of life!
The family gave permission to run an article in their home town newspaper, the Justin E Rodgers Foundation is mentioned a few times!
Thank you so much for helping us get this word out!
http://memphisdemocrat.com/2009/news/090430_hunt.shtml
I spoke with Dr. Centor earlier this week. We are going to be working together and coming up with a way to promote our website and get our name out there and help Dr.'s become more aware!
Tonight is our "A Life to Remember" Prom in Justin's name! I hope everything goes well and I'm sure he will be there with us!

We love you little brother and please help Kegan's family! They need all the love and support they can get right now!
Love,
Tammy

One year ago

2009-04-20T10:48:00.002-05:00

Our battle with this disease was just beginning. We had no idea what we were in for.

It really feels like just yesterday all of this happened. I feel like just yesterday I was telling my little brother when he was first admitted to the hospital "All of this to get out of School." Just kidding of course! I also teased him by not wanting to kiss him goodbye because I didn't want to get what he had and pass it along to my 6 week old. MAN DO I REGRET THAT!!! Because that was the last time I ever got to talk to him again!

We have gone from never hearing of Lemierre's, to dealing with it first hand, to trying to find information and research it online, to dealing with the aftermath, to starting a non profit to help others learn about it. All in one year. I can not believe all the emails I get from people all over the world not just the US but the world that have been affected by Lemierre's in some way.

I do want to thank all of you that send me your stories, comments and especially the questions. I would still believe everything on the Internet about this being such a rare disease if it wasn't for all of you who have shared your stories with me. I no longer believe this is a rare disease I know believe this is a disease that Dr's and so many other people out there have never heard of. And they want to learn everyone always asks me the same questions, what are the symptoms?, what is it?, what does it do to your body and how do you get it? Now we can answer all of those questions and more on our new website. lemierresyndrome.com

Shortly we will be working with Dr. Centor. He has years and years of knowledge about this disease and he is willing to share what he can with us to fight this thing and teach Dr.'s about it so it can be diagnosed and treated faster.

We have lots of fundraising events planned one of them is just next week. It is not really a fundraiser just a way to remember Justin close to the one year anniversary of when he received his angel wings! We are having a Benefit Dinner / Prom. Anyone in the St. Louis area is still welcome to come please email me. The cost is $30 per person.
Hopefully we will be holding a Lemierre's walk sometime in Sept maybe around his birthday, we have a golf outing planned for Sept too!

I will keep all of our events updated on the Contact Us / Events page at lemierresyndrome.com

Justin I heard a song the other day, of course by Rascal Flatts you know me I love them!! ;0) Anyway it had the most perfect lyrics every single word they sang reminded me of you and how much we MISS and LOVE you!!!! I won't type out the whole song but I have to tell you this one part! I'm sure you have heard me sing it to you a million times already! The name of the song is "Forever" there are about 4 other songs on their album that remind me soo much of you

"I miss you so much, your light, your smile your way & everything about us! Though your gone, your still here, in my heart in my tears. Yeah you sure left your mark you were just getting started. It wasn't long enough together but it was long enough to last forever! "

Love to all!

Tammy

Happy Easter

2009-04-12T19:31:00.002-05:00

Happy Easter everyone!!
This was the last Holiday we had with Justin.
Justin went to the hospital April 16th last year.
I remember telling my mom that he will be ok, he just needs some rest and good meds. Thinking he had pneumonia but I knew after just 2 days something was seriously wrong!
So much has happened since then.
I received our official noticed from the IRS we are a 501 (c) (3) non profit corporation.
Thank you to everyone that has supported us and helped get our name out there.
Speaking of the website we have a NEW ONE!!!!!!
www.lemierresyndrome.com
Pass it around to everyone.
I have received 4 new Lemierre's stories in the past 2 weeks. A few of them were at least 2 hours away from St. Louis. Thank you so much for sharing your stores and experience with me.
If you want to come to our first benefit dinner May 1st please send me your address!
sunflwz2@yahoo.com

Thank you!

Love,
Tammy

We will never forget you baby brother! We will always love you and you will always be in our heart. Cruz told me the other day he misses you and I told him to talk to you that you listen you just can't talk back. He says he can't wait to see you again!! Allen reminds Cruz of all the fun times you had like last year at Grandma and Grandpa's @ Easter wrestling around. And bugging you when you had all your friends over. We all can't wait to see you again. WE LOVE YOU
love your big sister!

Short Sleeve T Shirts

2009-04-08T13:43:00.002-05:00

I am going to be placing an order for Short Sleeve T Shirts next week. They will be the same design as the long sleeve ones.
They are $8 for S - XL and $9.50 for XXL and up. You can us our paypal check out here in our website or you can mail me a check. If you will be mailing me a check please email me and I will send you my mailing address. I am also going to drop the price of the Long Sleeve T-shirts to $11.00.
THANK YOU!!
LOVE,
Tammy Valencia

Since my last post

2009-03-24T14:51:00.004-05:00

Well it has been over 1 month since I last posted here. We have so much going on it's hard to keep up with everything. Hopefully in the next couple weeks our website lemierresyndrome.com will be up and running. It will have lots of information about Lemierre's and what we are doing to help teach the public. I will still post events and updates here on our blog site.

Justin would have been a senior this year at Eureka Senior High in MO. Prom is just around the corner and we have decided to throw a Remembrance Dinner / Prom to remember Justin and help get out awareness of this disease that took him from us. If you would be interested in going please send me your mailing address so I can send you a invitation.
Sunflwz2@yahoo.com is the email address to send it to.

We will also be holding the first Lemierre's Walk sometime in late May or early June. More information will be posted on these 2 events as the Days become closer.

I have found many people effected by this disease on Facebook and Myspace. All I did was search the word Lemierre within these 2 websites and many people popped up. On Face book there was even a support group called "Tears for Lemierre's" and a few groups Saying please pray for ..... they are in the hospital with Lemierre's. Just about everyone of those people on Facebook and Myspace all said the same thing.... "I came down with a rare disease", "the Dr's say it's so rare.." OR " leave it to me to come down with this rare disease" I wish these people would really see how rare it really is not.

We are still working on our very first project in teaching Dr's about this disease. Or getting them to want to learn more about it. I'm in the middle of pricing out the items we want to send these Dr's. We will first begin with Infectious Disease Dr's then go from there. Our first priority is getting our website up and running.

I am also going to be ordering short sleeve T shirts here in the next couple weeks. If you or your family are interested please email me and let me know sizes and I will add you to our list.
Sunflwz2@yahoo.com

THANK YOU FOR YOUR SUPPORT!
Love,
Tammy

E Script

2009-02-01T19:59:00.003-06:00

I'm not 100% sure how this works yet, but from my understanding you request a card from the sponsors listed on the site. ( We have a link to the right of the website.) When you shop at the store you present the card to the cashier, she scans it and then you pay for your total however you prefer. A certain percentage of your sale then goes straight into our checking account. IT'S THAT EASY! You pay nothing. Any one all over the US can participate in our fundraiser. There is also an online mall (the link is to the right of our website). They have many more merchants to chose from here. AND the percentage they give back to us is much more! UP TO 16%! There are merchants like JCPenny's, Home Depot, Barnes & Noble, Walmart, Sears, Baby's R US, and many many more.. Check it out again it doesn't cost you a dime.
Thank you for your support!
Love,
Tammy

What's new with us

2009-01-28T15:56:00.003-06:00

I am starting to gather infectious disease Dr's addresses. I found a website that lists them out by state. My plan is to send each one of them our brochure and something else to remember us by. It could be a coffee mug or some other item with our logo on it. This will take some time as there are many all across the US. If this disease has effected your family and you would like to make sure your Dr is on this list or you know of a Dr that you think could help in some way please send me their information and I will make sure they are added.
Sunflwz2@yahoo.com
Don't forget we have Long Sleeve T Shirts available. If you do not want to use pay pal to pay for them that is fine just email me and I will give you the address to send the check to.

Thank you!
Tammy

Hidden Valley event!

2009-01-14T14:34:00.002-06:00

The event held for us by Hidden Valley this past Sat was amazing! So many people came out and supported us!
We gave out lots of brochures and taught so many people about this disease! Thank you to Hidden Valley, S.O.K.A, Monster, US Cellular, Fox Creek Outfitters, Jennifer with her awesome scarves, All of my family!!!, Z107.7, 1057 the Point, Y98 for the interview!! Everyone that was involved THANK YOU, THANK YOU, THANK YOU!! Amity you are amazing and I love you!
This is really a HUGE help for us! Our first major thing we are going to do as a non profit is send out literature and something catchy to all of these infectious disease Dr's. They are the ones that need to learn about this disease! And because of this fundraiser we are going to be able to do just that!!! I will keep everyone updated on what we are going to send them.
We now have a brochure that answers the different common questions that we have been asked about Lemierre's. If you are interested in receiving some brochures from us, so you can pass around to your Dr or family please email me.
Sunflwz2@yahoo.com
Many families have emailed me telling me they are spreading the word in their area and was curious on how they can help us in this fight.
This is one way that doesn't cost a penny. Email me and I can send you some brochures to pass out to at least 3 Dr's If every one did this it would surely help our fight! Talking about this disease and making our Dr's learn more about it is they way to win!!
Thank you all VERY much and check back soon!
I have added the T shirts to our paypal check out!! When you get your shirt take it and hold it up in the light! You'll get a surprise! Make sure to have a tissue nearby!!
Love,
TAMMY

Z107.7 & 105.7 The Point

2009-01-06T12:44:00.002-06:00

Our event is on both of their websites!!

http://www.z1077.com/cc-common/mainheadlines3.html?feed=120074&article=4805317

http://www.1057thepoint.com/Point-Event-Calendar/Details.aspx?ID=107120

This is going to be a great time! Come hang out and help support a good cause. Even if you do not Ski or Snowboard. It is free to come in and hang out!!! Ski and snowboard pass amounts can be found @ www.hiddenvalleyski.com
Thank you!
Tammy

Sat Jan 10th J-Rod Jam @ Hidden Valley

2009-01-03T19:54:00.002-06:00

I hope everyone in the St. Louis area has made plans to come out and see us at Hidden Valley this coming Sat!
I have hung flyers @ the Eureka & Fenton St. Louis Bread Co, Solid Rock Cafe in downtown Eureka, at National City Bank at the entrance to Augustine Heights, Fox Creek Outfitters and Schnucks in Eureka too. Please stop by and get one or email me and I can send you one. Pass this flyer around to everyone you know! This is a great thing Hidden Valley and all the other sponsors are doing for us! They include S.O.K.A, Fox Creek Outfitters, Monster, The Point, Z1077, US Cellular, and many more!! There will be a contest "Jib for Justin" @ 2pm and a raffle. We will have T Shirts available there as well as bracelets, decals, ribbons, scarves all sorts of stuff to help us spread awareness of this disease! If you don't Ski or Snowboard that's OK! We will be hanging out in the Lounge as well! And to do that is free!!!!! ORRRR now is the time to learn! They have lesson available!
We will have donation canisters set up and Snowflakes you can purchase and write your name on or a little note to Justin and it will be hung up in the Lodge all year long!
Amity and the staff at Hidden Valley have been absolutely amazing during this tough time so lets thank them and get as many people as possible up to Hidden Valley Sat Jan 10th from 9 am - ???? until we decide to leave! ;0)
Justin will be there in spirit so please bring us your stories if you knew him personally we love to hear them!!
Thank you!
LOVE,
Tammy

My Christmas Present to my Baby Brother!

2008-12-24T01:54:00.004-06:00

I have decided to write my brother a letter and post it here on his website as my Christmas present to him!!

Justin the time that you have been gone has been going by so fast! But I think I can speak for everyone when I say the pain in our hearts feels the same. I have no idea what happen or why you were taken from us. Lots of people keep telling me that this was your destiny, to save people from this disease! But I still don't get it. Nor will I ever until the day I come home and meet you in Heaven. There are about a million songs on the road that remind me of you and make me think of you. I have to admit I think about you just about 10 - 15 hours a day, now keep in mind I sleep for 8 hours. You have come to see me in my dreams 2 times so far. One of the times you were about 8 and you just sat by my side, didn't say much. It was almost like you were trying to tell me something but I wasn't listening to you. I cry so easily now! It use to take a lot for me to cry but anything makes me shed a tear! Cruz and Allen miss you soo much. They have no idea why this happened the way it did. They really just don't get it at all! You would be soo proud of Kristiana well I should say I know you are b/c I believe you are with us ever day! She started crawling yesterday! I love you so much. I know you love me too even though we didn't say it all the time nor show it. Every year for the past 5 yrs I have gotten you name for Christmas. And just about every time you either wanted a CD or a hoody! It is very hard for me to go into the stores that remind me of you. I went into PacSun in CA and I had to walk out I couldn't stand it! When you were in the hospital I bought you a Big Black hat from there and TJ had him sign it that night for you! Tony wore it the other day I really wish I could have given it to you! Every time I see a boy your age around me I just want to grab him and hug him!!! Sometimes I sit and listen to the way people talk to each other and the little stupid things people get mad about and I just want to tell them my story and how much I would LOVE to nit pick and argue with you right now but I can't! I just really wanted to write and tell you how much I love you and how much work we are doing down here to help save other families from going through this. Tomorrow morning will be different b/c for the past 17 yrs I got to watch you get almost double the presents I did! LOL I know there will be lots of tears tonight and tomorrow but I know you are here with me and I will NEVER forget you and always love you! I smile and talk to you all the time I hope you can see and hear me!
I love you with my great big heart Justin the bee!
Love you big sister!

Another article

2008-12-17T16:33:00.001-06:00

We were in a article from back in Nov. Check it out!

http://www.madison.com/tct/top5/314937

Thank you!
luv,
Tammy

T-SHIRTS !!!!

2008-12-02T20:40:00.004-06:00

We have pretty much finalized our T shirt designs! If you would like to start order them please send an email to Sunflwz2@yahoo.com in the subject line just put T Shirts. Let me know the size you would like along with Short or Long Sleeve and how many. right now it is looking like the short sleeve T Shirts will be $9 and the long sleeve will be $13 please add $1.50 for all XXL or above. If I need to ship these items to you please give me your mailing address and I will calculate postage and let you know what it will be. You can make checks out to
Justin E Rodgers Foundation and send them to
11695 Castle Ranch Rd
DeSoto MO 63020
ORR you can pay through our Donate button on this website. Send me an email with the sizes and long or short sleeve and pay via the "Donate" button.
These shirts may take about 3 to 4 weeks to get printed and delivered to you. I will place our first order Dec 12. I have to have your check before I can place the order.
They will be light Grey color. The long and short sleeve will have the same design. Our logo on the front and on the back it will say "Not just your average infectious disease... www.lemierresyndrome.com" With angel wings over the shoulder blades. I will post pictures after our first set of orders go through Dec 12.

Thank you to everyone!!!!
Love,
Tammy

Happy Thanksgiving

2008-11-27T12:56:00.003-06:00

Happy Thanksgiving to everyone!
This is a day that we are all suppose to sit back relax and think about what we are thankful for. For all the people that cook relaxing is not in the equation.
I am thankful for my friends and family that have supported us through the last 6 months. It seems to be getting harder but I guess that is normal. It always gets harder before it gets easier. It doesn't help that now the holidays are here.
For those of you in the St. Louis area Justin's head stone has been put into place. My mom and dad picked out a beautiful bench with a great saying on the top.
I hope everyone has a good safe Thanksgiving!

Love,
Tammy

T Shirts and other Awareness items

2008-11-18T21:11:00.002-06:00

Thank you to everyone that has purchased our new ribbons, bracelets and other items we have.
The Candles I have listed are some of the items we are selling at our craft fair. We have candles with Ribbons attached and we have Coffee and Hot Cocoa Candles too. My mom came up with those ideas and they have been a big hit at the fair. Great unique Christmas gifts.
I have had some emails about T shirts. We are still in the process of creating the logo and trying to figure out the color we want, what we want the back to say and all the good stuff. Please check back with us periodically to update your self with our items. Hopefully we should have a good start on the T shirts by the end of this weekend.
We also have www.lemierresyndrome.com pointing to this site so if you would rather give people a shorter site to type in tell them to go to www.lemierresyndrome.com

Thank you again and please continue to check back with us. It's always changing here!

Love,
Tammy

6 months today!

2008-11-12T20:23:00.002-06:00

Well it's been 6 month today. We have come so far! I have had over 50 cases emailed to me and met so many people due to this horrible disease! Thank you to everyone that has helped us get the word out and emailed me their stories! Your support and help means so much! We have so many ideas on how to spread the word but we have to take one step at a time.
Justin is still in our thoughts everyday and it will continue that way forever! He is watching over us and guiding us along this crazy journey we have just begun.

Again thank you everyone!!!

Your thoughts and prayers for my family and I have meant the world to us!

Love, Tammy

Another Case and Michael

2008-10-30T13:53:00.002-05:00

I received this last night!
Hi Tammy,
I don't know how to post to the site, so I am just sending you a message.My 19-year-old son is at UCLA with classic Lemierre's. They virtually ignored his high fevers and sore throats for more than a week. And being a stoic guy like Justin, he tried to say it was nothing. He was finally admitted to the UCLA hospital system, but fortunately,even though it has spread to lungs and skull, he should be okay. I want you to know it is the subject of the UCLA Med school seminar this week. And they are going to also suggest that the medical profession rethink the mentality that you send them home with Tylenol if it is not Strep. Thank you for making your site on the Web. I believe that Justin is somehow helping us get through this. Please keep it up.
Best regards,
Alice

And please continue to keep Michael, as well as all the other people in your prayers. Michael is still in the hospital! His mother sent this update to me this morning,

Michael just had another echo and it shows that the leakage in his mitral valve is slightly less, but it still is a big leak, and the clot is smaller, BUT he has fluid around his left lung now. They will give him lasik for a few days to see if the fluid will go down. We don't really know what this means as of yet. We need to talk to his cardiologist about it.

Thank you to all the nurses and even Dr's that have contacted me letting us know they are helping get the word out! They have all put up flyers around the hospitals they work and is passing around our website to everyone they can.

I have ordered more business cards so if you see me out or would like me to mail you some please let me know. I should have them this week.

The new bracelets are going to be in this week too. We are asking for $3.00 or up donations for these as well as the pin or magnet ribbons we have. If you live out of St. Louis please email me @ sunflwz2@yahoo.com and all we will need from you is a check for the donation and we will get them out to you, I will let you know via email what mailing address to send it to.. Please add $1.50 for postage. I am going to set up an paypal account so if anyone wants to pay via CC they can through them. I'll let ya know when it is up and running.

Awareness and knowledge is the key to battling this disease! Even if you don't know much about Lemierre's that's all you have to say to people.
"I don't know much about this disease but I know it is VERY deadly and has taken the lives of young adolescents all over the US and the world. So please check out this website!"

Luv,
Tammy

Craft Fairs

2008-10-27T21:04:00.003-05:00

Well they seem to be going well. We have had a good response and most of the people we are meeting saw us on the News.
Thank you to everyone that has helped us!!!!
We really appreciate it and couldn't have done it with out you all!
I am now researching Taylor Momsen, she was supposedly in the hospital with a life threatening throat disease! She was released already but makes me wonder what it was!!!!!!! She is a 15 yr old actress that plays a role in the TV series "Gossip Girls"

Prayers needed for Michael

2008-10-22T20:39:00.004-05:00

Michael is a young man whose life was turned upside down due to Lemierre's back in Feb of 08. He has fought a very long on going battle and has won his battle but today had to go back into the hospital because he has an infection in his heart valve. He has a website of his very own you can visit http://www.prayformichael.com/ I told him and his mother Justin's whole family and all his friends are praying for him. His mother and I have stayed in contact ever since she found out about Justin months ago.. I also learned of a young 18 yr old girl in OH that will most likely be getting a heart transplant too b/c of the damage done to her heart. I'm not sure of her name at this time but we also continue to for pray her.
Thank you!
love
Tammy

Lemierre's

2008-10-20T10:14:00.000-05:00

Lemierre's syndrome (or Lemierre's disease) is a disease usually caused by the bacterium Fusobacterium necrophorum, and occasionally by other members of the genus Fusobacterium (F. nucleatum, F. mortiferum and F. varium etc.) and usually affects young, healthy adults. Lemierre syndrome develops most often after a strep sore throat has created a peritonsillar abscess, a crater filled with pus and bacteria near the tonsils. Deep in the abscess, anaerobic bacteria (microbes that do not require oxygen) like Fusobacterium necrophorum can flourish. The bacteria penetrate from the abscess into the neighboring jugular vein in the neck and there they cause an infected clot (thrombosis) to form, from which bacteria are seeded throughout the body by the bloodstream (bacteremia). Pieces of the infected clot break off and travel to the lungs as emboli blocking branches of the pulmonary artery bringing the heart's blood to the lungs. This causes shortness of breath, chest pain and severe pneumonia. Fusobacteria are normal inhabitants of the oropharyngeal flora. This is a very rare disease with only approximately 160 cases in the last 100 years.SymptomsThe first symptoms are a sore throat, extreme lethargy, fever, and general body weakness, but after a week or two these symptoms are followed by a spiked fever, rigors, swollen cervical lymph nodes and septicemia (infection of the blood) which can cause complications in other parts of the body including abscesses of lung, brain, and other organs, kidney failure and also effects on liver and joints if untreated.TreatmentLemierre's syndrome is easily treated with antibiotics, but because sore throats are most commonly caused by viruses, for which antibiotic treatment is unnecessary, such treatment is not usual in the first phase of the disease. Lemierre's disease proves that, rarely, antibiotics are sometimes needed for 'sore throats'. If a persistent sore throat, with the symptoms are found, physicians are cautioned to screen for Lemierre's syndrome. Fusobacterium necrophorum is generally highly susceptible to Beta-lactam antibiotics, metronidazole, clindamycin and third generation cephalosporins while the other fusobacteria have varying degrees of resistance to beta-lactams and clindamycin. The disease can often be un-treatable, especially if other negative factors occur,i.e. various diseases occurring at the same time, such as; meningitis, pneumonia etc.IncidenceLemierre's syndrome is currently a very rare disease, but was quite common in the early 20th century before the discovery of penicillin. The reduced use of routine antibiotics for sore throats by doctors may have increased the risk of this disease, with 19 cases in 1997 and 34 cases in 1999 reported in the UK. The incidence rate is currently 0.8 cases per million in the general population, leading it to be termed the "forgotten disease". The mortality rate was 90% prior to antibiotic therapy, but is now generally quoted as 15% with proper medical treatment, although one series of cases reported mortality as low as 6.4%

Welcome to our site!

2008-10-07T08:25:00.002-05:00

Please make sure and read all the way through our website. There is a lot of helpful and useful information here. Pass it along to all of your friends. Even bring it up in conversation the next time you take your children to the Dr. Justin's Dr's told me while he was in PICU that people die from this disease they just don't know this is what it is. For some people there is just not enough time to diagnose them so the Dr's believe their death was caused by Pneumonia or strep. Just 5 years ago the statistics were 120 case in 100 years. NOW the statistics are 1,000 cases a year and 100 deaths a year! This disease is coming back and we have to be more aware! It attacks young health adolescents ages 14 - 25. Everyone I have personally talked to that has survived this disease refers to it as their "Near Death Experience!" This disease attacks the body faster then any Cancer or HIV. Justin went into the hospital April 16, 2008 and passed away May 12, 2008. 4 weeks it took this disease to take him away from us. Every case I have read is a little different, it attacks different organs each time. I've heard it attack the brain, the heart, the kidneys and in Justin's case it went after his lungs. We are continuing Justin's fight! Justin was not old enough to be a soldier but in my eyes he IS OUR soldier. He gave his life to save others in my point of view! We are saving lives and educating Dr's and bringing more awareness to this horrible nasty disease! For more information please also visit www.medrants.com This Dr has been studying Lemierre's and sore throats for YEARS!
Thank you!
Justin E Rodgers Foundation for Lemierre's Awareness

NEWS CHANNEL 5 INTERVIEW!!!!!

2008-10-06T17:05:00.001-05:00

The interview we did last week is going to air tonight at 10 on Channel 5!!!!

Tags for balloons

2008-09-27T14:29:00.003-05:00

Here is something I wrote up if you would like to attach it to your balloons you release.

Justin – HAPPY 18th BIRTHDAY!! We still miss you everyday that goes by. You are our super hero and always will be! Anyone who finds this balloon please know it was let go for a young 17 yr old that passed away from a disease Dr’s know very little about. Please help us spread the word! Justin E Rodgers Foundation for Lemierre’s Awareness Inc
www.lemierresyndromejrodgers.blogspot.com
We LOVE you JUSTIN!

Just copy and paste it in a word document or note pad. ;0)

Happy Birthday Baby brother we love you!

I will take pictures of all the gifts Justin will get tomorrow and post them on the site!
Thank you for helping us make this day so special!
Anyone coming to my mom's please try to be there @ 4.

Justin E Rodgers Foundation for Lemierre's Awareness Inc

2008-09-26T12:42:00.002-05:00

We are officially OPEN for Business! I received our Tax ID # today! We can now open a bank account and proceed like a normal Non Profit. We are going to set up tables at craft fairs around St. Louis this Oct - Dec and sell hand made candles, stationary, ribbons and anything else we can think of. We will be attaching cards to each item directing them to this website and asking them to help us spread the word of this disease.
We are also able to accept donations now! Any kind of donations are great! Most people think directly of Money but we can accept anything that will help us spread the word, your time, paper to print on, toner or anything at all. We will soon have a website for our Non Profit! All this in perfect time for Justin's Birthday!
Speaking of Justin's birthday don't forget to release your balloon @ 5:00 Sunday!
Anyone that is going to try to make it to my mom's you can come anytime around 4 and please bring your own balloons. THANK YOU!!

Luv Tammy

My 3rd Cousin Jacob

2008-09-21T21:28:00.003-05:00

Hi there! Last Tues I received an email from my 2nd cousin Cindy. She was letting us know that her nephew was sick over last weekend with the flu. After some time passed his dad just couldn't help but think that something didn't seem right and he thought of Justin and what had just happened to us. He decided to take him to the ER. Ends up he has bacterial meningitis. The Dr's told him that if he would have waited any longer he would be in some SERIOUS TROUBLE. When she first told us about him he was still sedated and had a probe in his brain to monitor the swelling. As of today he is awake and looks to be doing much much better! I wanted to share this story with everyone even though it has nothing to do with Lemierre's. We all know and have that little voice in our heads when something just isn't right! Please, please, please listen to that little voice. Jacob I can speak for everyone in our family and every one that reads this site when I say, "We are so glad you are OK and you are one lucky guy to have such a great family! We hope you get to come home soon!"

** Justin's birthday is this Sunday Sept 28th. I have had many emails from all over the US saying they will be joining us in a balloon release in there homes Sunday at 5:00 pm. For everyone that will be coming to my parents house to release balloons we are asking that everyone please bring your own balloons with you. We have no idea how many people will come but please bring your own balloons. Any color that you like! I am going to print out tags for you to attach to the balloon if you like.
Thank you!
Tammy

Check this out!!

2008-09-17T15:35:00.003-05:00

I received this email just a little while ago!

Hi Tammy,

Just wanted to send you a quick email about something I thought might interest you. I am from Toronto, Canada, and a friend of mine is in medical school at the University or Toronto. The other day in class they did learn about Lemierre's syndrome, the bacteria that causes it, and that it's prevalence is on the rise! I was surprised, but very happy to hear, that future doctors in Toronto at least are learning about it in medical school. Just thought you'd be happy to know that too!
Talia

I'm very happy to hear that Lemierre's is being brought to Dr's attention!!!

Justin's article

2008-09-14T21:42:00.002-05:00

Well between my sister, Stephanie and I think we went to close to 30 stores trying to get our hands on a New York Times. I finally was told the magazine actually comes inside the news paper and that you can find the news paper in the boxes outside the stores. Anyway I never did get my hands on one but Stephanie says she bought some for us. We are also going to call Dr Lisa Sanders (the Author of our article) and see if she could send us some. I think I'm going to call some places tomorrow to see if we can get our hands on a couple more. I didn't realize how spread out they are. I thought it was kind of like the Post Dispatch everyone sold them. Anyway it is a GREAT informational piece! Thank you so much Dr. Sanders for helping us get our word out!

Love, Tammy

Well it's out!!!

2008-09-14T10:54:00.001-05:00

Here is the link to the article!

http://www.nytimes.com/2008/09/14/magazine/14wwln-diagnosis-t.html?_r=1&sq=lemierre&st=cse&oref=slogin&scp=1&pagewanted=print

more and more cases

2008-09-09T20:53:00.002-05:00

I have had 3 more cases emailed to me this week!! AND did you hear!!?!!? One of Dr Phil's young interns had strep throat and then passed away 1 week later. Kinda of interesting huh! Well I emailed the show 3 times letting them know about Justin and our website and that I heard of the intern that passed and thought maybe he had Lemierre's, but no word back. Justin from ID his mother said they had 5 cases of Lemierre's pop up in the last 6 months!!! They did a news paper interview and gave them our website info for people to go to to learn more about Lemierre's!!! If you get a chance to do any interviews or talk with any people that can get our info out as well please do so. I have soo many ideas running through my head on ways to bring about awareness! I would love to just start contacting all the major city's news papers and talk to them all about doing an article.. Don't forget the New York Times Magazine comes out Sept 14th!!! Also Justin's birthday is Sept 28th in 3 Sundays please, please, please release a balloon to him at 5:00 that evening and wish him a happy 18th birthday! Take pictures and send them to me if you could. It doesn't matter if you live in CA, ID, WI, Canada, Mexico we would love to see everyone that did this for us so take pictures and email them to me @ sunflwz2@yahoo.com The 2 colors we are using to promote everything we do is Green and Blue.
Thank you to everyone that emails me their stories about their Lemierre's battle!

New pictures & Justin's Birthday

2008-09-02T13:34:00.002-05:00

My mom and I added some new pictures to the site during the last week. If anyone has pictures of Justin they would like us to possibly post or would just like to share with my family and I please email them to me. sunflwz2@yahoo.com

Justin's 18th birthday is Sunday Sept 28. My mom would love for everyone to release a balloon on that day in honer of Justin. It doesn't matter where you are CA, FL, CO, Canada, Mexico anywhere if you would like to release a balloon for Justin we would appreciate it. I am going to make up little tags to put on the string of the balloon. You all can copy and paste it onto a note pad or word document and print it out then attach it to the balloon and let them go 5:00 pm your time Sunday Sept 28th. Take pictures if you can and send them to me. We can post them here and let everyone know what part of the country or world you are in. Anyone in St. Louis can come to my mom's and let their balloon off with us if you like. If not you can let them off at your house or park or anywhere you chose! I will post more about this as we get closer to the date. ;0) OH and don't forget Sept 14th pick up a New York Times magazine and check out the article about Lemierre's! It's Justin's story but I don't think they are going to give out his name!
Thank you very much!!!
Luv,
Tammy

Lots of Hits

2008-08-22T10:55:00.003-05:00

We have had lots and lots of new people to our website in the last 3 days!!! Over 500 just in the last 3 days!!! We have had over 2,000 in 2 months!
We decided on a name for our nonprofit, Justin E. Rodgers Foundation for Lemierre's Awareness!!!! Our lawyer is working on all the paperwork now.
I have had 4 cases of Lemierre's emailed to me this week that have all occurred over the summer!!! The emails just keep coming from people who have been effected by this disease. And all the stories sound so much a like. Everyone at the end of their email always asks if there is anything they can do to help. I really appreciate that. The only thing I can say in return to that is request a flyer and maybe put it up around your home town. OR Fwd it in a email to everyone in your address book. That's about all we can do right now is talk about it to people and pass the word around more. If you don't know very much about Lemierre's just take the person you are talking to to our website. Once we get our Nonprofit up and going I will be asking for Volunteer's all over the U.S. and then some. I will actually have a website where you can sign up to volunteer. You don't have to be here in St. Louis to help.

Thank you so much to everyone that has helped us get the word out!!!
luv,
Tammy

New York Times

2008-08-15T10:33:00.002-05:00

We have just found out it will be the Sept 14th issue of the New York Times our story will be in. There will be an article on Justin and his Lemierre's Battle. The Author's name is Lisa Sanders and it looks like she has been writing about Diagnoses for at least 7 + years. I do not think they will name Justin as the patient but the important thing is millions of readers will now be more informed on Lemierre's!!!!

I received a packet of info from the State's Attorney General Office on starting a Nonprofit Organization and I have printed out a bunch of info from the Internet too. So my family and I will get together this weekend and start brain storming. First thing first we need to come up with a name. If anyone has any ideas you can email me. I like having Lemierre's in the name so people know what we are fighting but then again I would love to have Justin's name in there too because he is the reason we are fighting SOOO hard! We have lots of work cut out for us but it will be totally worth it!!! I have looked and looked and have not found anyone trying to bring awareness to this disease through a nonprofit. So that is just what we are going to do. We will have fundraisers and all sorts of things going on to promote the awareness of this disease that hurts many many people and families. I don't want to just target it hurting teens because I have heard of 30 - 40 year olds getting it as well. Look at what Dr. Robert Centor wrote on his website this morning! "Finally we had an epidemiologic study which defined the extent of this disease. I have extrapolated the Danish data to the United States. Assuming the same incidence, I estimate that we have approximately 1000 patients with Lemierre’s yearly and 100 deaths. I would put the confidence range of these estimates at 50% greater or less than this estimate." So everyone sitting back thinking this won't happen to me or my kids will not be effected from this or Dr.'s thinking "nah that's not what my patient has" is not going to fly anymore. This thing is getting bigger and bigger and more and more people are being effected as the months go by. Just a few years ago they were saying 120 cases in 100 years now it is 1,000 in 1 year!! We need to start getting scared and making sure if it does happen we (including our Dr.'s) are well educated and it is take care of right away! That's why I am going to put my heart and soul into these awareness efforts!
If you have never been on Dr. Centor's blog site you should check it out! www.medrants.com

Thank you again and go get the NY Times Sept 14th!
Luv,
Tammy

Happy Birthday Jamie!!!

2008-08-09T11:52:00.003-05:00

Today is my brother Jamie's birthday! We are actually getting mom and dad to go out with us tonight! I can't wait to show Jamie what I made him! I'll tell you all about it in a couple days. I don't want to ruin the surprise! LOL
We had 102 people at the website yesterday!!!!! Another big day!!!
Keep forwarding those emails and the flyers. I have had a few requests for the flyer so please if you don't receive one contact me and I can send it to you. Sunflwz2@yahoo.com It should be real easy to open it is in a word document, it even has Justin's picture on it!!! So people can put a face with the name!
I've had so many people that I know over hear other people they don't know talking about Justin all this promotion is really working!
Someday we will all be able to make sense of this and we will know exactly what our plan on earth was. When Justin signed my wedding picture he put "I wish you many happy years and I will always be with you." And that was exactly to the day 1 year before he passed away. My little brother was taken from us on my 1 year wedding anniversary but I don't mind sharing that day with him. They are both days I WILL NEVER forget! I will always miss and love him but I know I'll see him again and at that time I will thank him for writing that for me and waiting for me the night he passed away!
We love you Justin!! And I promise you we are going to fight this horrible disease with all of our strength!

luv,
Tammy

WOW!!!

2008-08-08T12:13:00.002-05:00

The response from the emails have been amazing to say the least!! We have had over 300 people visit our site in 3 days!!! Usually we have anywhere from 10 - 40 people visit a day, yesterday we had 108!!!! Justin is really becoming famous!!
My family and I would love to hear the progress on the 2 in OH and the one in NC that currently have the disease! If you could please email me, sunflwz2@yahoo.com . I know some don't like to share details but we just want to make sure these teens are ok. I was forwarded a great Power point presentation describing a lot of different things about Lemierre's. It's just amazing. From what I gathered from this presentation is that 10% or more sore throats have this bacteria that causes LS. Its when the people are not given the correct antibiotics when Lemierre's starts to develop. I think there are other ways our children are getting this disease but we just are not made aware of it yet.
Every week I get an email or a comment to this website of another patient that currently has or had Lemierre's in the last couple months. If this keeps up that means I will get at least 52 - 104 cases emailed to me each year. And the old research shows 120 cases in 100 years. Justin's website is PROOF they are WRONG saying 120 in 100 years.

Thank you!

Tammy

Flyer

2008-08-06T09:31:00.003-05:00

One of my family members created a flyer promoting Justin's website and Lemierre"s awareness. I emailed it to everyone in my address book and put this message in the body of the email.
"Hi there! One of my family members created this flyer to pass around to everyone we know. Please open it up, print it and pass it around to everyone you know. Also forward this email onto everyone in your address book. I promise we can save lives! I have had 25 cases of lemierres emailed to me in the last 3 months and I now know of 4 teenagers that did not survive. All of the ones who have survived have some sort of breathing problem now or other major problems. This disease attacks young healthy adolescence ages 13 - 24. It literally attacks their organs and shuts them down. I had a Dr call me the other day about a case and I really feel like the knowledge Justin's website is provided him has saved his patients life! Please pass this on this is not a chain letter this is not a joke. I will be printing this flyer out and putting it in my children's school and placing it everywhere I can Dr's offices, teacher's lounges, dentist offices everywhere! We will soon be doing News interviews and who knows we may end up on Oprah! ;0)
All I'm asking is you click on forward and add everyone in your address book then click on send! It will maybe take a total of 5 min.. If you don't wanna do it for the lives you could save do it for my little brother who's life was cut way too short at the age of 17! This disease took him away from my mom, dad, my sister, my brother myself and my 3 kids.

Thank you!

Luv,
Tammy"

If you would like me to send you this flyer please send an email to: sunflwz2@yahoo.com

We had 87 hits on this website yesterday and I believe it was due to the emails we all sent and forwarded on. THANK YOU!

CDC

2008-07-31T16:27:00.002-05:00

As I said yesterday I sent an email to the CDC (Centers for Disease Control) and I received a reply back today from them here is what they said,
"Thank you for your submission CDC-INFO. Your comments on Lemierre's Syndrome have been forwarded to the CDC’s Division of Foodborne, Bacterial and Mycotic Diseases for their information. They will contact you directly if they have any additional questions."
So hopefully we will hear from them again soon. Here is the email I sent to them yesterday,
" It was brought to my attention the # of cases is rising dramatically for Lemierre's Syndrome. Anyhow, my 17 year old brother just passed away 3 months ago from that same disease. 2 months prior there was a 14 year old girl that passed away at the same hospital where my brother was. In the last 2 months I have received a total of 23 stories emailed to me of Lemierre's syndrome. It is the most horrifying disease I have ever seen. It literally attacks and kills the organs in the body. In my brother’s case it attacked his Lungs, Kidneys and they also found signs of it in his brain. Dr. Robert Centor, rcentor@gmail.com. He also has a website www.medrants.com. He has been studying Lemierre’s and sore throats for a long time now. He may be able to help in some way. I have been working really hard to get the word out about Lemierre’s. I asked a dozen Dr’s here in St. Louis and only a few had every heard of it. We are also getting ready to do a news interview to bring more awareness here in St. Louis. I conducted a study on my website and 95% of people that had visited my site and NEVER heard of it. Everyone says it’s a rare disease but you would not believe all the stories that have been emailed to me just in the past 3 months. All the stories I have received took place in the last 3 years. I do believe it is still rare but I also believe it is making a come back and we have to figure out how to stop it or recognize it faster. My brother fought it for 1 month and he lost his battle May 12, 2008 the day after Mother’s day and my 1 year wedding anniversary. I will not give up until someone will conduct another research on this disease and find out why it is coming back and why some people live and some don’t. The last research that was done on this disease was in the 1980’s in Denmark and they said there have only been 120 cases in 100 years. Which is NO LONGER TRUE; I am now studying and figuring out the ins and outs of starting up a foundation or charity to help fund research for this disease. Please do not hesitate to contact me if you like. Thank you for your time, Tammy Valencia"
Hopefully I have caught some one's attention!!!!! Time will only tell!!!
Luv,
Tammy

Researches

2008-07-25T12:09:00.003-05:00

I have been asked on numerous occasions if there is any research going into Lemierre's Syndrome or charity or research efforts someone can donate to? I don't know the answer to this question I haven't seen any researching efforts online. I know they did research this back in he 90s in Denmark I believe. If anyone reading this knows of something going on like that please email me or post a comment and let us know.

My mom emailed Kay Quinn to let her know we are ready to do an interview when they are, so it is in the works... I will keep you all updated.

Gordie sent me an email and let me know about his battle with Lemierre's, Thank you Gordie!!! And he said he is working with people in his area getting the word out and learning more about this disease.

Thank you to everyone that is helping us get the word out about this disease! My biggest wish is that someone at one of the University Hospitals in the US will do another study on this disease, there is so much that is unknown about this thing! I'm not sure if its unknown or just not talked about or taught to our Dr's ??? And there are so many people now that have had it or will get it. The last study done said only 120 people have had it in 100 years (that was in the 90) that is so out of date. 5 teenagers (that I have heard of) have had it in the St. Louis area alone in the last 3 years. Justin being one of them. I read online at WrongDiagnosis.com that in order for a disease to be considered rare it has to effect less then 200,000 people. so I guess this disease is still considered rare b/c of that. I found 2 women on that website that had this disease as well.
Well I will never give up on this fight on getting the word out and demanding more research. I post this website as much as I can! I even have it set up as my signature so it goes to everyone that receives an email from me. In California we stayed at Residence Inn and I placed this website as their home page when someone opened up the Internet n their 2 computers they had for customer use. I think we had over 120 hits each day on Sat and Sun when I did that. And I will keep doing little things like that until we learn more!
Thanks for listening and helping me.
luv,
Tammy

2 months today

2008-07-12T23:18:00.002-05:00

Well we lost Justin 2 months ago today to this horrible nasty disease. We still miss and think of you every day little brother! But all the effort we are doing to bring awareness to this thing is really working! This is the only thing that makes me feel better about this whole situation. Everyone gives us kudos for doing this to help save others but honestly I don't know what I would do if I didn't have this website to help me get through everyday. I still think about everything you went through in the hospital, you are the strongest person I know!! You are our Superman!

All I can say to everyone reading this is please don't ever stop talking about Justin, always let people know what took our son, brother, uncle, nephew, cousin, & friend away from us WAY to early.

I talk about him everyday and tell people every chance I get what took my little brother away from me.

Thank you to everyone!

Love, Tammy

What is Lemierre's you ask ......

2008-07-03T13:05:00.001-05:00

Justin has some great friends!

2008-07-03T12:40:00.004-05:00

I was thinking today as I was trying to figure out something to write and it dawned on me I haven't said much about Justin's friends!
Justin really does have some great friends. I wish I would have gotten to know you all while Justin was still here. They have treated us so good through all of this. The night Justin passed away they all did a candle light walk to our house chanting J-Rod & Justin's name! There were so many of them! It was amazing! And some even stopped by the house weeks later just to make sure my mom and dad were OK. Patrick and Stephanie were just there Monday! ;0) At Stephanie's Graduation party last week you all sat around us and told stories and just made us feel right at home! Thank you for everything you have done to make us feel better. I know you all are grieving for him too but the fact that you think about my mom and dad and making them feel better is just amazing! While Justin was in the hospital the boys would come over and cut the grass for my dad with out anyone asking them too! He was soooo lucky to have friends like you! Sometimes I get jealous because I know he is around you all more then me right now. Ha-ahaha! I'm trying to post the song's and the poems you all write for him. I'll have to switch them around and repost new ones and take down old after awhile.

Chrissy, Jamie and my family of 5 are headed to LA tomorrow to hang out with our Aunt Sandy and her family. So all of you that can go check in on mom and dad while we are gone please do... I'll try to post while in LA but my crazy kids might be running too crazy for me to do so.

Brent, thank you for sending me the contacts that you did!! I have emailed them both and we'll see what happens. He sent me contact for the TV show Mystery ER and a NY Magazine writer too. Hopefully something comes of it!
Just in case any of you are wondering I put ZZ Top & Lynard Synard in the music on this page b/c my dad said it was Justin and his favorite. I picked the song about sunglasses b/c Justin loved his white sunglasses! ha-ahaha
I am going to re post the symptoms and the definition of Lemierre's Syndrome so that it is not all the way at the bottom of the page. Everyone please have a great 4th of July and please be careful!!!
Love,
Tammy

I'm so happy it's working!

2008-07-01T18:59:00.002-05:00

Our awareness efforts are really working! Thank you so much!! We are going to be doing an interview with News Channel 5 as soon as Chrissy, Jamie and I get back from Cali. I have had so many other Lemierre stories emailed to me. One person was from the same High School we all went to. Just wanted to send a big thank you to everyone again for helping us and all your kind words! They mean the world to us! I am having a hard time commenting back to the people that leave comments so if anyone that reads this knows how I can comment back to people that leave us a comment please let me know. You can email me @ Sunflwz2@yahoo.com
Thanks again!
Tammy

Happy birthday dad!

2008-06-24T15:27:00.002-05:00

Today is my dad's birthday! HAPPY BIRTHDAY DAD! I won't tell you all how old he is, I don't want to embarrass him. ;0)
I want to say a personal thank you to Caitlin. She emailed my self and my mom letting us know she had Lemierre's syndrome 2 years ago. From what it sounds like she went through everything Justin did, life support and everything. Thank you for sharing your story with us Caitlin and thank you very much for helping us get the word out about this nasty disease!

Also My uncle Greg told me that Kay Quinn (the Healthbeat lady from news channel 5 here in St. Louis) sent a message to my Uncle Tim and is researching Lemierre's and is looking at possibly doing a story on it and Justin!!!!!!!!!! That would be amazing. I read an article yesterday from 2004 that talked about Lemierre's and how it is on a rise. So for 5 years its been on a rise, then how come 95% of the people that come to Justin's website have never heard of it. We are making a difference thanks to ALL OF YOU!!! Please don't ever give up and stop talking about Justin and this nasty disease that took him from us! I know My family and I won't!
Luv, Tammy

3 More Stories

2008-06-23T10:31:00.003-05:00

This is really frustrating to me. This disease is obviously not as rare as researchers think anymore. I know I have said this a million times and I will say it a million more until the right person listens to me! I have had 3 cases emailed to me over the weekend!!! They all left comments on the other posts so check it out. Since I began this site 1 week after Justin passed (4 weeks ago) I have had close to 20 stories emailed to me of Lemierre's Syndrome. 20 that all happened in the last 3 years. So WHY are researchers saying 120 cases in 100 years!!! I am happy to hear that 90% of the cases I have heard about the patients have lived but it breaks my heart that my little brother didn't. I don't understand why him and this other teenager didn't make it? What made their cases so different. I've heard people say "the doctors have to catch it in time". I really believe the Dr's caught it in time in Justin's case. Or so I thought. All the other cases sound just like Justin's. One case I read about the young man had symptoms for a month, then finally they figured out what he had. I don't get it, a month and he still came out OK. This just goes to show how strange and unpredictable this disease is. I think one of the MAIN problems with diagnosing this disease is the time it takes to diagnose it. From what I have heard they have to let the bacteria grow in a dish type thing then slowly add antibiotics to it to see how it reacts. And I believe this all takes around 3 - 4 days.. Again I'm not a medical expert by any means so I could be wrong, but this is becoming less RARE there has to be a blood test that can be done or something to that nature to diagnose this horrible disease faster. I think the awareness we are doing here is working but it is so hard to hear of all these cases and still researchers say its rare. How many teenagers or young adults does this disease have to hurt or take from us before the big Doctors and researchers take the word RARE away from the description of Lemierre's Syndrome. I really do believe this one little 4 letter word "RARE" is hurting our awareness efforts. When a Doctor or nurse hears the word RARE they most likely think to them self "well if it is rare then this person most likely doesn't have it". I COULD BE WRONG but deep in my heart I don't think I am. I have now stopped myself from saying the word rare when explaining Lemierre's Syndrome. I consider winning the lottery rare but not a disease that is really harmful to our sons, daughters, sisters, brothers, nieces, nephews, friends, cousins, or enemies. This is no longer a RARE disease in my vocabulary or on this website.
Thanks for listening!
Tammy

Stats

2008-06-20T12:02:00.002-05:00

I added a stat counter to our page down below the BIO I added for Justin. Its really neat, It tells us how many loads our page gets everyday. It also tells us out of those page loads who is re-occurring that day and who is new. Check it out I think between yesterday and just this morning we have had 83 page loads!
Today is Chrissy's Birthday!!! Happy 22nd Birthday Chrissy! June is a month full of Birthdays! Mine was the 5th , Chrissy's is today and my dad's is Tues the 24th. And Father's day was last weekend. This has been a hard month to get through but we can do it! It really brings comfort to me and the rest of my family when people tell us how they are going to tell their Doctors and pass along this website to everyone they know!
I have had a few people tell me how scary this disease sounds. It is scary and people should be scared of it, but if we can demand to doctors that our children be tested through blood instead of a swap in the throat we may just be able to save lives. I'm not sure if that is what it is going to take or not. All I know is I want everyone to know the name Lemierre and know that it hurts and kills young healthy (or not healthy) adults and teenagers! I was so upset when I went to the Dr myself and asked her if she had heard of Lemierre and she said no! But then I have heard lots and lots of Doctors and Nurses have never heard of it. I want to change that, I want them to know what it is and what it looks like and if they ever find a patient with it to send them straight to the hospital! Most cases I read about the patient is in and out of the ER or Doctors office at least 5 - 15 times before they figure out what it is they really have! To me that is just insane! When they couldn't figure out what Justin had I was getting so mad and aggravated! He had a temp of 103 - 105 for over a week before they figured out what it was! I kept thinking this is 2008 they should be able to figure out what a person has faster then this. But this bacteria is so sneaky and from what I've heard can grow with out oxygen. I don't know much about medical things at all but from what I read this is a really hard disease to diagnose. Please, please urge your doctor to learn more about this disease!

Father's Day

2008-06-16T15:47:00.002-05:00

I want to wish all the Father's a Happy belated Father's Day.
I haven't been able to publish a post because I kept getting an error message on my computer.
Anyway Happy Father's Day to all those wonderful Fathers out there. Including mine!

We missed Justin very much on this day. We did go visit him and got some great ideas for his headstone and burial site.
I have had some great emails coming my way from people passing along this website and awareness in general. We are close to having 300 votes on the website for the top poll, I think that's pretty darn good for only having this website up and going for 3 weeks.
My Uncle Greg and I posted Blogs on KSDK.com and he received a reply from Kay Quinn saying Lemierre's sounds like a very interesting story and she will look into it. I also had some people email me saying they have connections with channel 4 news, SLU & Barnes Hospital. We are all doing a great job here and hopefully we can beat this horrible disease and not let it hurt anyone elses family!
Thank you again!
Love,
Justin's Family

One month

2008-06-13T08:17:00.005-05:00

Well it has been one month since Justin was taken from us because of this horrible nasty disease. I first off have to say a huge Thank you to everyone that is thinking of us and praying for us (Justin's friends and family) it really does help in times like this! Everyday I get 2 or 3 new posts of people I don't know nor does my family telling us how sorry they are for our loss and that they are thinking and praying for us and myself and my family has to say THANK YOU!! I'm really happy about how much traffic this website has gotten. It looks like everyday I have 10 - 20 new votes on the top poll. A friend of the family said she is going to work on getting us a logo started for this awareness. We can put it on T Shirts and all sorts of stuff to get the word out. My mom talked with A Doctor that has been researching sore throats for a really long time. He asked my mom if he could use Justin's story when trying to teach other Doctors that a sore throat is not just a simple sore throat it could be much much more.

I've learned so much in the last month about this disease and how MIS diagnosed Strep Throat is. I believe this to be like Cancer. Doctors are not exactly sure how people get cancer we just know they do and some survive and some don't. That is how I feel about this disease but I think this disease hits you a lot faster. We found out Justin had it and within 3 weeks of knowing what it is he passed away. And we never got to say goodbye and Justin never knew that is what he had. Cancer patients most of the time have months to try to fight and when the worst comes of it they say their goodbyes and they know what took them away. In my eyes this needs awareness just like cancer. I again emailed Oprah and some others about this story. In the next couple weeks I am going to type up a generic letter about Lemierre's and maybe send 4 or 5 letters out a week to doctors I find online. If you would like a copy of this letter to send to your Doctor or Doctor's in your area just send me an email.
Thank you again for all your LOVE, SUPPORT AND PRAYERS!

Cards and Ribbons

2008-06-10T15:57:00.002-05:00

Sorry I haven't posted in awhile Google would not let me log in.. Kept saying wrong email address. Oh well.....
I passed out cards to family and friends I have seen over the weekend and so has my mom. Everyone seems to love the idea. My cousin Sara made Ribbons to sell at her school and also to people at the hospital while Justin was in the PICU. She came by my mom's the other day and dropped off a whole bunch she made. If anyone is interested in some please email me and let me know. They are blue with Justin's name written in silver. They are $1.00 a piece. I can mail them to you and you can mail me a check or what ever works for you. The coffee shop in Eureka also told my Uncle Tim that we could set up some information there about Lemierre's and Justin's story.
I have now emailed; Oprah, Regis and Kelly, Ellen, Tyra, Mike and Juliet, all the news channels, Discovery Health and many more TV shows. My Uncle's friend posted the article on a Blog on News channel 2's website. It got a lot of comments. People are just shocked that Dr's do not know about this disease. I actually googled "Misdiagnosed Strep Throat" yesterday and so many things came up. There is actually a website called www.wrongdiagnosis.com !!!! I understand Dr's make mistakes (they are only human) but it just seems that every story I read they either didn't do a throat culture or they did but they didn't send it out to be looked at. Also I found a website called Sciencedirect.com I found some interesting articles about Lemierre's there too. One of them came from Australia and it was a warning to all ICU and ER nurses letting them know Lemierre's is making a big come back and what to look for. Another was urging Physicians to do blood work for sore throat patients and making sure they monitor them more. These were both written around 2006.
We have gotten a lot of responses from the news article!! I guess I will just keep on emailing until someone will listen. Maybe I'll start mailing letters and calling too.

Justin's News Article

2008-06-04T16:14:00.003-05:00

My mom just called and told me Justin's story made it out today in the West Magazine in the Rockwood area. I copied the article from the site and put it towards the bottom of this page.

My Cousin Jessica had a GREAT idea!!! It was to email or mail letters to all the University Hospital's around the US. I googled University Hospitals and already sent 7 emails. So far I hit SLU, Upstate NY, Cincinnati OH, Cleveland, and TX. I think I sent 5 emails to different people at Upstate NY. My goal is to try to send out 5 emails every other day to different people at different University Hospitals.

Thank you for helping me spread the word! Who knows we may have already saved a life! I had someone tell me they know someone whose teenager was sick with a sore throat and the Dr couldn't figure out what they had. That person sent them to my website. And my mom had someone do the same thing. If we have saved 1 or 2 lives from this website and its only been 2 weeks, can you imagine what will happen if we keep this up!! Its going to take a lot of people and a lot of time to bring awareness to this illness but I know we can do it!

Love to all, Tammy

More emails

2008-05-29T11:54:00.002-05:00

I just sent out 29 more emails to talk radio shows around St. Louis and other cities. Here is the email I sent:
Today I’m emailing you to bring awareness to a very serious illness. This disease is a fast acting killer. It attacks the body faster then any Cancer, HIV or anything I have ever heard of. My 17 yr old brother past away 2 weeks ago from it. The say it’s rare but it is making its way back into our world and needs to be stopped. Doctors do not know much about it at all. Actually I would guess 70% of Dr’s have never even heard of it! I asked 3 last week and they all said “What’s that?” 2 teenagers died in St. Louis with in 2 months of each other from it. The name of this disease is “Lemierre’s Syndrome” also known as the forgotten disease. Everyone that survives it calls it their “Near Death Experience”. It is also known as strep throat gone bad. I’ve emailed every news channel, radio station, news paper I possibly can to get awareness out about this horrible killing disease that no one wants to talk about or research. Please check out my brother’s website and if you can somehow add it to your station’s website to promote awareness that would be amazing. Or even mentioning it once on your show could make a huge difference. That one special Dr may hear it and want to start researching it more.
www.lemierresyndromejrodgers.blogspot.com
What if your son or daughter was diagnosed with Strep or tonsillitis and a couple weeks later was on a ventilator or life support struggling to live. Most of the cases I have read about it took the Dr’s at least 2 or 3 weeks to figure out what the people had. That is ridiculous! WE need to learn more about this disease and research it to stop it from hurting our children. It mostly affects young healthy adults, ages 14 to 19.
Thank you for your time!!!

Tammy Valencia
Sunflwz2@yahoo.com

If you would like to copy it and email everyone you know, radio stations, Tv stations talk shows anyone that would be great too!

No replies yet

2008-05-27T14:06:00.002-05:00

Well I emailed every news channel here in St. Louis and even a couple talk shows. However I have had no replies yet. I'm sure these things take time. I also emailed around 5 people from the Post Dispatch. My mom had a good idea of creating just a generic letter about Lemierre's Syndrome and mailing it to all the Dr's we can. I created 250 business cards with information on Lemierre's Syndrome along with this website just to hand out to everyone we know. We let off 17 balloons Sat in honor of Justin. I attached notes to the Balloons saying:
These balloons are set off
in memory of Justin Rodgers.
Check out his website & pass it along
www.lemierresyndromejrodgers.blogspot.com
Knowledge is power!!!
We love you little brother!

We won't give up until someone will listen to us!

Another Case

2008-05-22T09:27:00.003-05:00

Today I am going to try to email as many newspaper and TV channels as I can. My mom gave an interview yesterday to a local newspaper that is interested in Justin's case.
Yesterday my mom also spoke to the family whose daughter passed away from this same disease in March. She was also at Cardinal Glennon. Her family is trying to get the word out about this illness as well.
Yesterday I found a blog about Lemierre Syndrome and 4 people left comments saying their Dr told them they had Strep Throat and gave them antibiotics with out even giving them a strep test. That is exactly what Justin's Dr did to him. I feel like some Doctors (NOT ALL!!) are just either getting too lazy to do tests or are just too busy and over booking themselves to do the tests. Or maybe its the insurance companies telling them not to. That is just my point of view or my thoughts on this situation. I hope it is not the truth.
I went to the Dr when Justin was in the hospital b/c I started getting a really bad cold. When I was telling the Dr of my symptoms I mentioned my brother being in the hospital with Lemierre Syndrome. She looked at me puzzled and said "Whats that?" 3 days later I took my daughter in for her 2 month check up and after her visit I asked the Dr (Who has been my family's pediatrician for about 20 years.) if he had ever heard of Lemierre Syndrome. He said No and went and got his medical book to look it up. The book he grabbed was at least 6 inches thick and when he found lemierre syndrome in it he looked at me and said, "Just to show you how rare and un researched this disease is look what they wrote." It was maybe 2 paragraphs long and that was it. Pretty much all the paragraphs said is sore throat and mono like symptoms, something about blood clots & can be serious. That's when I knew we were dealing with a nasty illness.
I know websites say this is a RARE disease but tell me how rare it really is when within 2 months of each other 2 children passed away from this thing not even 30 miles from each other and there is a yahoo support group for those who have survived it.
When Justin first was diagnosed w/this I did a lot of research and everyone I found that survived called this their "Near Death Experience!" I guess the people we should really be bringing awareness to are Doctors and Nurses.

Its working keep it up!!!

2008-05-20T09:24:00.000-05:00

This site hasn't even been up and going for 24 hours yet and we already have so many people saying how great it is!! Thank you to everyone who is passing on the word!

Like I said this is our first blog/website so please be patient with us! I've had some people say why the long web address? I didn't just want to put LSjrodgers because no one knows what LS is I wanted to spell it out that way if it catches someones eye they will say "Lemierre's Syndrome what's that?" and maybe Google it.

My children's physician had never even heard of it and he was Justin, Jamie, Chrissy and my physician too. He pulled out the book to read about it and in this HUGE medical book there was only 1 small paragraph about it. That's ridiculous! This disease is hurting our children and there is one paragraph about it! I promise that will change!
Thank you!!

Awareness

2008-05-19T13:13:00.001-05:00

Well the first post to this site is going to just be about Lemierre's Syndrome and the definition.

Lemierre's syndrome (or Lemierre's disease) is a disease usually caused by the bacterium Fusobacterium necrophorum, and occasionally by other members of the genus Fusobacterium (F. nucleatum, F. mortiferum and F. varium etc.) and usually affects young, healthy adults. Lemierre syndrome develops most often after a strep sore throat has created a peritonsillar abscess, a crater filled with pus and bacteria near the tonsils. Deep in the abscess, anaerobic bacteria (microbes that do not require oxygen) like Fusobacterium necrophorum can flourish. The bacteria penetrate from the abscess into the neighboring jugular vein in the neck and there they cause an infected clot (thrombosis) to form, from which bacteria are seeded throughout the body by the bloodstream (bacteremia). Pieces of the infected clot break off and travel to the lungs as emboli blocking branches of the pulmonary artery bringing the heart's blood to the lungs. This causes shortness of breath, chest pain and severe pneumonia. Fusobacteria are normal inhabitants of the oropharyngeal flora. This is a very rare disease with only approximately 160 cases in the last 100 years.

Symptoms
The first symptoms are a sore throat, extreme lethargy, fever, and general body weakness, but after a week or two these symptoms are followed by a spiked fever, rigors, swollen cervical lymph nodes and septicemia (infection of the blood) which can cause complications in other parts of the body including abscesses of lung, brain, and other organs, kidney failure and also effects on liver and joints if untreated.

Treatment
Lemierre's syndrome is easily treated with antibiotics, but because sore throats are most commonly caused by viruses, for which antibiotic treatment is unnecessary, such treatment is not usual in the first phase of the disease. Lemierre's disease proves that, rarely, antibiotics are sometimes needed for 'sore throats'. If a persistent sore throat, with the symptoms are found, physicians are cautioned to screen for Lemierre's syndrome. Fusobacterium necrophorum is generally highly susceptible to Beta-lactam antibiotics, metronidazole, clindamycin and third generation cephalosporins while the other fusobacteria have varying degrees of resistance to beta-lactams and clindamycin. The disease can often be un-treatable, especially if other negative factors occur,i.e. various diseases occurring at the same time, such as; meningitis, pneumonia etc.

Incidence
Lemierre's syndrome is currently a very rare disease, but was quite common in the early 20th century before the discovery of penicillin. The reduced use of routine antibiotics for sore throats by doctors may have increased the risk of this disease, with 19 cases in 1997 and 34 cases in 1999 reported in the UK. The incidence rate is currently 0.8 cases per million in the general population, leading it to be termed the "forgotten disease". The mortality rate was 90% prior to antibiotic therapy, but is now generally quoted as 15% with proper medical treatment, although one series of cases reported mortality as low as 6.4%.[