Walk 4 CMT
Time & Location
About The Event
On September 15th, 2019 history will be made on Long Island New York as I lead a team in the first EVER Walk For CMT event.
Charcot-Marie-Tooth (CMT) is the most commonly inherited peripheral neuropathy, estimated to affect one in every 2,500 people, more than 2.8 million worldwide, without regard to age, gender or ethnicity. Identified in 1886 by three physicians - Jean-Martin Charcot, Pierre Marie and Howard Henry Tooth - CMT is a progressive disorder that slowly damages the nerve cells leading to a person's extremities. There is no way to predict how far or how fast the disease will progress, and the severity varies widely from person to person. Some are able to go about their lives with only moderate difficulty, while others require greater assistance. In rare cases, CMT can be fatal. There is no known cure for CMT. The mission of the CMTA is to support the development of drugs to treat CMT, to improve the quality of life for those with CMT, and, ultimately, to find a cure. Our vision is a world without CMT.
My name is Jessica, up until four years ago I had been misdiagnosed since the age of 8 believing I was the only person in the world with some rare unknown disease. When I was accurately diagnosed with having Charcot Marie Tooth Disease, a progressively debilitating disease, I cried out of fear of the unknown. Having been told there may come a day I may never walk again, or become a double amputee and loose the ability to use my hands, there is no known cure and I was up against time, who wouldn't be afraid right? But there was also a sense of peace. Peace that I had finally found and come to terms with, I was once lost and now I am found. Found among a community of countless people just like me. I have physically fallen and managed to back get up each time. Since my diagnosis I have been actively helping find a cure. I have even taken part in a clinical trial drug study. Anything to help those who suffer with this chronic disease.
I kindly ask that you Walk With Me in the first ever WALK for CMT on Long Island New York. You can physically join my team in our walk, you can sponsor us, or both. I have a great supportive group of people who are even participating in a virtual walk on the same day at the same time but in a different state. They are doing this because they too want a world free of CMT. Seeing me have over 70 reconstructive surgeries over time and managing to keep on keeping on gives them a purpose in finding a cure, for that I am forever grateful! It's far bigger than just me its for everybody affected across the world.
I would be honored if you joined me at the event! If you are unable to join and would like more information on how you can help us reach our fundraising goal, or perhaps you're able to donate an in-kind gift such as water, gift cards etc. The links and attachments in this email will direct you to making your contribution. You're also able to create an online profile on my team page to assist us in reaching our goal. Together we can work towards finding a cure.
The Story of Jessica Lee: CMT & Me
Four years ago I was properly diagnosed with Charcot Marie Tooth Disease type 1A. I am a limitless individual who lives with limitations that do not define me. I have had over 70 reconstructive surgeries in my feet, ankles, elbows and hands. Everyone has a story, mine is a portrait full of colorful scars that tell the story of a survivor filled with purpose and drive! I have been chosen, and for that reason I am committed to helping raise money for a cure so that someday we can live in a world free of CMT. Join me in my mission by sponsoring my team in a walk for a cure with a great purpose! Help make a difference. Together, with your support we can reach our fundraising goal.
To view the on air TV Interview about my journey and my new purpose in living with CMT, go to youtube and type in "Jessica Lee CMT". The video can also be seen by clicking on this link: https://www.youtube.com/watch?v=R3W0qANMQow&t=2s.
Follow this link to donate to this history marking event or to contact me: https://cmta.akaraisin.com/Pledge/Event/GroupHome.aspx?seid=18715&mid=82&sgid=21832#.XSfegY9-l0E.email