The gift of life

Published 3:08 pm Wednesday, December 20, 2006


As 2006 comes to an end, I owe tremendous gratitude to the American people for their incredible support of the Muscular Dystrophy Association this year. Millions of you had a part in providing “my kids” with the greatest gift of all – the gift of life.

The MDA research you’ve helped make possible is providing precious new hope for children and adults with more than 40 neuromuscular diseases, including nine types of muscular dystrophy, amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) and Freidreich’s ataxia.

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This year has seen an astonishing burst of progress in lifesaving research funded by MDA — making your gifts of life especially gratifying.

If you watched my MDA Labor Day Telethon, you’ll know what I mean. You may have seen a child who’s very much on my mind this season. She’s a tiny blond 5-year-old with beautiful blue eyes. Her name is Megan Assink; she lives with her family in Michigan.

On the Telethon, Megan’s parents, Deb and Greg, told how your support has truly saved their daughter’s life. Their story is all the more poignant because in 2004, they lost a child, Kelsey, to one of the diseases MDA covers, called Pompe’s disease.

Megan also has Pompe’s, but she’s been able to participate in a trial of an experimental treatment called Myozyme, which MDA research helped to develop.

And the news couldn’t be better! Despite Pompe’s usual grim path, Megan is walking and getting stronger. She’s surviving, and has every chance of being around for many more years.

This spring, the U.S. Food and Drug Administration approved Myozyme. Now, when a baby is born with Pompe’s, doctors can immediately prescribe a treatment that means life.

The good news doesn’t stop there. We’ve seen promising early results from trials of several potential treatments in youngsters with Duchenne muscular dystrophy (DMD) -giving me more hope than ever that we’ll soon have a way to slow down the deadly progress of Duchenne.

In November, the national news reported that MDA-supported work involving nonembryonic stem cells had restored strength in dogs with a disease like DMD – one of the most dramatic laboratory results we’ve ever seen.

On the last day of November, MDA made big news again when we announced at an international conference that we’d helped to uncover new, very significant clues to the genetic origins of ALS, an awful disease that strikes adults in their prime. With your help, we’re funding research using fast-track 21st-century technology that’s poised to deliver more dramatic findings.

As I look back on 2006 during this cold dark December, all I see is new life. Thanks to you for making these fantastic breakthroughs possible. And thanks for helping me present “my kids” with the gift of life.

Jerry Lewis

Jerry Lewis is a veteran comedian, actor, director, writer and National Chairman of the Muscular Dystrophy Assoc ation. For more information about MDA, visit