Hey all! Thank you for your support and interest.

The silence on the blog hasn’t meant I’ve not been busy busy busy!

I’ve been in contact with county officials, lyme awareness and support groups, funders and researchers and backers and local businesses. This time frame is all about networking.

My local gyms (where i teach cycling) are going to support the race by doing a  “spin marathon” in each club, where members pay to cycle for up to 3 hours, and we raise money for the charity being sponsored. I’m super excited!!!

There is a growing group  of supporters who will be running the Cherry Blossom 10-miler (in D.C.) as “Team Twist of Lyme” this year, as well as the Frederick 1/2 marathon. If you’d like to join the group (you aren’t required to pace with us, only to show your support by wearing the shirts we are creating, or signing up as a group with your friends for the respective races), email me!

The amount of people who are involved already is overwhelming. It honestly brings me to tears. I am so grateful for your partnership.

I’m working on flyers and pamphlets to distribute. Right now, here’s what I need you to do:

1. Make sure you’re a fan of the race on facebook, if you’re a facebook user

2. Contribute YOUR stories (or that of someone you know) to the blog (anonymous unless you want it to be public) by emailing them to twistoflymerun@gmail.com

3. Email the same address mentioned above to get on the email list for updates.

Please continue to spread the word so we can get as many people involved as possible. I’ll do my best to keep you posted and provide materials for you to distribute as soon as I can!

We are going to be holding an interest meeting sometime in January or February in the MD area. Keep an eye out for updates on that!

Thank you all – stay safe, stay healthy, and have a great holiday season!

-Jenny

 

Website: www.Lymemd.org
EIN: 84-1714349
Tax Status: 501(c)(3)

Mission

The Foundation focuses on the long recognized and newly defined group of individuals with post-treatment Lyme syndrome[1]. The goal is to clearly define and understand the cause of disabling symptoms these patients may suffer and improve their diagnosis, treatment, and outcomes through research and education.

Education: Provide educational material and links to attempt to capture the complexity of Lyme disease and identify those areas that are well understood while identifying those areas of uncertainty and confusion. Conducting prospective cohort study of post treatment Lyme syndrome. Research: The Lyme Disease Research Foundation of Maryland is the first community-based, university-affiliated Lyme disease evaluation center devoted to the study of post-treatment Lyme syndrome. It will work to accomplish the following: Analyze the clinical variables and severity of illness in patients referred for evaluation of persistent symptoms of Lyme disease: o Establish the prevalence of post-treatment Lyme syndrome in Dr. John Aucott?s Maryland infectious disease referral practice. o Evaluate the accuracy of different diagnostic strategies for detecting post-treatment Lyme syndrome. o Identify clinical risk factors in patients who have developed post-treatment Lyme syndrome. · Identify biologic variables that are associated with the development of post-treatment Lyme syndrome in patients with acute Lyme disease: o Examine elements of the human immune system associated with development of persistent symptoms after the standard course of antibiotic therapy. o Examine properties of the infectious bacteria Borrelia burgdorferi that correlate to the severity of infection and types of symptoms presented in patients. · Test strategies for the treatment of post-treatment Lyme syndrome by carrying out randomized clinical trials for the scientific evaluation of potential treatment protocols for post-treatment Lyme syndrome. * Work toward establishing a consensus within the medical community on strategies for the diagnosis and treatment of post-treatment Lyme syndrome patients

 

TwistofLyme has some very exciting news. After much thought and prayer and some networking (and 3 years of treatment under my belt), I’ve decided to go ahead with something I’ve wanted to do for a long time… and need your help with!!

I’m organizing a “Race for a Cure” to support Lyme Disease research.
All proceeds will go solely towards race cost, t-shirts, and the donation.

The race will be a 10k and will be run/walk on the C&O trail in Point of Rocks, MD, beginning at mile marker 49. Depending upon the number of participants, we may send everyone in waves, starting at marker 50 instead. Walkers will start an hour after runners.

The Marc train station has plenty of parking immediately opposite the trail, and there are several other lots in this area where people can park within walking distance of the starting line.

The race will be in mid September of 2010, probably around 730 or 8 in the morning. Obviously, as I’m just kicking the planning off, the details aren’t set in stone yet. I appreciate any and all input!

There will be several prizes donated (hopefully) by local stores, and I’m hoping to get the two organic markets in the area to cover food post-race.

Lyme disease is epidemic in it’s proportions right now, and awareness is the first step to beating this disease. We will be handing out pamphlets and other literature at the race for people to read and spread so we can help the greater community really understand how to avoid, diagnose, and treat it.

There are only 2 other races in the U.S. that I know of being held to support Lyme research – I’m very, VERY excited about this opportunity to get something going in our area! Thanks for taking part!

Most of you know how personal this cause is for me. Having battled Lyme for 3 years now, and in my 6th year of dealing with the awful affects of this disease, I know the toll this takes on your health: spiritually, physically, mentally… it is a horrible disease and it completely changes your life, forever. Two of my sisters have it as well, along with many dear friends.

God has been incredibly faithful in the midst of it, but my heart goes out to those who are suffering without clarity or treatment… and to those who, like me, are still the “guinea pigs” for treatment. There is not enough funding or support for research right now. You can help with this – I’m sure many of you know, by now, of others who’ve been affected by this disease, possibly those close to you. I’m grateful beyond words that I can count on you for support, input, and help in spreading the word about this race!

If you have a web page, running group, club, gym… please tell them to start getting ready for Twist of Lyme 2010 Race for a Cure. If you have any thoughts, questions, input… email twistoflymerun@gmail.com. I can send you some stuff to print, or put you on a list for distribution when we get the materials printed and ready to hand out. Your time and energy are precious, so I thank you for even considering helping out!

If you are able to contribute monetarily towards the prep for this race (printed materials, newspaper advertisements, etc. that will be going out), that would be an amazing help.

Basically, spread the word, get people excited, and give if you can.

This disease deserves our attention. Or, more accurately, those suffering now and those who will suffer in the future deserve our efforts to alleviate it. Please consider contributing time, energy, and funding towards this race. I assure you it will not be wasted!

Thanks again. Let’s make this a memorable event by getting the word out and getting involved! You’ll never regret making a difference.

Become a Fan on facebook:  http://www.facebook.com/pages/2010-Twist-of-Lyme-Race-for-a-Cure-for-Lyme-Disease/

Follow Twist of Lyme on Twitter!:  http://twitter.com/TwistofLymeRun

Promote with the graphic by saving it and uploading to your profile, web page, etc. or printing to put up on in public or hand out.

Promotional print-outs, pamphlets, stickers, etc. will become available in Spring of 2010.