
Bernadette
An Upcoming Documentary about Living with CMT
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Read all about Arlene in Arlene on the Scene... available in September
Elliot Adler, age 9, 4th grade, future Forest Ranger, happiest when playing with his
new friends, computer games and his backyard tree house
How’s Elliot doing? Not a week goes by that we aren’t asked this question. They want to know how our 9 year old grandson is coping with his disease. As doting grandparents we could talk about Elliot all day long, but we thought we’d ask Elliot to answer for himself.
“I’m good. We moved to Atlanta so I can be close to my new doctor at Emory. Dr. Bruce is pretty cool. He said I’ll need surgery on my feet soon. I’m psyched that I’ll miss school. Mom said I’ll still have to wear my braces - even after surgery – and that stinks. When they find a cure and fix my legs, I’ll burn my braces. Well, they’re plastic so I guess I’ll just recycle them. I thought my feet were getting big bumps on them from the braces but Dr. Bruce told me it was my bones. They aren’t where they should be. My muscles won’t hold the bones in place. I’m glad my feet are only part of my body! The rest of it is doing good and I’m happy with our new house. Cool. I guess that’s how I’m doing.” – Elliot
Elliot suffers from Charcot-Marie-Tooth disease (CMT), one of the most common inherited neurological diseases. His is a rare spontaneous mutation and as his nerves die, his muscles atrophy. Although CMT is not life threatening, the prognosis is often a debilitating progression in the legs and arms. His braces are like ski boots that extend to his knee. He has to wear these day and night. Can you imagine what this must feel like? Life is not easy for Elliot. This disease affects millions worldwide!
Thanks to so many of you, the first year of a two year research project has been fully funded. Dr. David Pleasure, of the University of California Davis, is developing mice in which Elliot’s form of CMT is present. Even more significant, these mice will have a progressive form of the disease. This research is being done to help stop the progression as well as find a cure.
The second year’s research is more exciting and progressive and has the greatest ability to find the answers. Your contribution to the H.E.L.P fund (Help Elliot Live Proud) is more critical than ever. It seems so easy … just raise the funds and find the answers but research is costly. Please give here and help us fund Dr. Pleasure’s efforts so he can help Elliot and the millions of people with this debilitating disease.
We are extremely grateful for your past support and a donation of any size will be deeply appreciated. We thank you all for sharing our love and concern for this little 9 year old.
Sincerely,
Iris & Nathan Adler