Charcot Marie Tooth Disease - CMT Disease - Hereditary Neuropathy

Dear Friends,
 
Many thanks to everyone who participated or sponsored the Ironwill/HNF Spinathon on June 20.  The event was a huge success and we are still receiving donations! I am deeply grateful to all the HNF members who sponsored me in the spinathon; I achieved my goal of spinning for four hours!  I find the spinathon so empowering because it gives me a chance to prove to myself that I am so much stronger than my CMT.  

 
Having CMT has been incredibly difficult; I was asymptomatic until I was diagnosed with cancer at age 29. Before this happened, I was an incredibly active person.  A newlywed, I was training for the NYC marathon when I was diagnosed with cancer.  Even though my charts indicated a family history of CMT, my oncologist didn't know what CMT was and I was given massive doses of vincristine.  After one treatment, just twelve hours, I had severe foot drop.  I was never able to walk normally again. 
 
Even though I had a family history of CMT, it took  me years to receive a diagnosis.  The doctors kept telling me the neuropathy was related to my chemotherapy and that my symptoms would go away.  Of course, they never did.  At age 43, I can barely walk without braces.  Sometimes, I still grieve the life I used to live. However, although it has been devastating, I am oddly thankful that I have been given the opportunity to do something profoundly good with my life.  Not everyone has the chance to face down adversity and emerge a stronger person, different than before, with a greater resolve to make a difference.  For this I am grateful.
 
I founded HNF so that I could help as many people with CMT as possible.  We strive to provide the latest information on CMT because knowledge truly is power.  We launched the TRIAD program and the HNF Research Consortium because we know that the fastest way to cure a disease is to collaborate through a forward-thinking, pharmaceutically based approach.  I am excited by the possibilities the future holds and I know that we will have an impact on millions of lives.
 
I want to thank again everyone who helped with the spinathon.  Gary Salmirs, founder of the Ironwill Foundation, is an amazing person who motivates everyone he knows to improve themselves and improve their community.  Rebecca Pennino and Erica Salmirs' hard work and dedication made this event a success and I want to thank them as well.  And to all of my friends, HNF members, and supporters who sponsored me, I offer my most heartfelt thanks. 
 

And to all of you, I thank you for your support and your well wishes.  You are an inspiration.  If you haven't had a chance to support HNF, you can donate here.  I hope that you will continue to support HNF in the future as we move forward together towards a better day and a brighter future.  
Best, 
 

Allison  T. Moore
President & Founder