Slides

I just realized the company that we had our picture slides through on this site and our Lemierresyndrome.com site is no longer in business. ;0( So I will be working on getting more pictures up of our items we have for sale as well as the pictures of Justin.

Donation Sent!

I put a check in the mail for Dr. Robert Centor and his medical team for their study! I'm really excited that we get to help them with their study! Thank you to everyone that has purchased awareness items and helped us in our fundraising efforts. We are still trying to come up with ideas for more fundraisers. If you have an idea or heard of something another Non - Profit has done and you think it would be a big success email me! ;0) Sunflwz2@Yahoo.com I received a phone call from my cousin the other day and she heard of a Zombie 5K Run. She heard they were looking for Charities to help so I emailed them and we'll see what happens. It looks really cool! www.runforyourlives.com I would love to be a apart of this event. Pretty scary stuff! Tammy

Fundraisers

Many of you have contacted me in the last 4 years and have expressed to me your thoughts of this horrible disease. Some of you are survivors, some of you family members of lost loved ones and some just learned about the disease through our efforts. First off I want to thank you all for contacting me and expressing your thoughts and encouragement to us. It's because of all your emails and comments that we have continued our efforts and our fight against this disease. For the last 4 years our fight was to make people more aware of this disease, in the hopes it would reach Dr's so we could diagnose this faster. The past 4 years I have been in contact with Dr Robert Centor. Many of you already know him and his website. www.medrants.com He has spent over 30 years studying pharyngitis and all those nasty bacterias. I approached him in Jan asking if he knew of anyone doing a study or needing funds to help start a study and coincidentally that is when he told me about what he has going on. He has a new study going on right now for Fusobacterium necrophorum pharyngitis. This is what he had to say about his new study "We hope to describe the signs and symptoms of fusobacterium pharyngitis. Currently too many physicians withhold antibiotics from adolescents and young adults with significant pharyngitis. We want to change the approach to adolescent and young adult pharyngitis and hopefully prevent the development of Lemierre syndrome." He needs funds to help run this study and I told him we would be willing to help. Many of you have contacted me asking how to run or set up a fundraiser in your area. Since we are the only Charity or Non Profit for Lemierre's it is very hard for us to set up a walk that happens in cities all over the US. I just came back from a fundraiser a company held in PA last weekend. It was a huge success and it will really help towards our goal in this study. We have done a few fundraisers here in St. Louis that have been great we held a Walk, a paintball tournament, a dance, the event at Hidden Valley a few years ago was fun and brought in the largest donation we have received yet! If any of you have ideas of how we can get others involved in cities all across the the US as well as in the UK we would love to hear them. Please email me as soon as you have an idea. If any of you want to set up a fundraiser in your area but do not know how to start or what to do I would be willing to share my thoughts and opinions with you. Any ideas or thoughts you all have would be greatly appreciated! Thank you for your emails, thoughts, prayers and helping us fight this battle!

Our trip to PA

Chrissy and I made the trip to PA this past weekend to accept a donation from a company whose employee developed Lemierre's this past Nov. Every year this company holds a fundraiser for a charity that hits close to home to one of their employee's. This year they chose us since their employee/friend Marc developed lemierre's not too long ago. Everyone was very nice and I love that they do this every year! This was their 22nd year holding this fundraiser. Every year they choose 3 men and 3 women and they hold a BBQ lunch and bake sale and instead of the employees paying for the food they put the money in the canister of the person they want to win. I'll give you one guess on who was crowned King, Marc! ;0) I will post pictures as soon as I receive them. This donation they gave to us is really going to help with our first research study!

Yep that's right Dr. Robert Centor is starting a research study on why young adolescents developed Lemierre's, why the Fusobacterium necrophorum grows with some of the patients with sore throats and not the others...? We are going to help fund this research which means we will be holding fundraisers in the very near future. I am also putting together a database in my Yahoo account with every person who has contacted me in the last 4 years in regards to lemierre's. I will be sending out an email to every person in that database asking for their help in fundraising. Hopefully I will be done with this by the end of this week. We need ideas. As well as help holding some of these fundraisers in other parts of the U.S. Maybe your company has a charity they donate to each year, maybe this year it could be to us to help with this study! Or maybe you want to hold a BBQ or a walk or some other event to help us raise funds for this study. We would really appreciative of any ideas or any thoughts anyone has. Check out Dr. Centor's blog at www.medrants.com Thank you!! Lots of love, Tammy

Exciting things going on!!

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

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!!!!

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!

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

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

4 month old baby with Lemierre's

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

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

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

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

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!

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