From MDA camp to promising drug trials, summer brings reasons to be hopeful
Can you hear it? It’s the sound of children’s laughter at nearly 80 MDA summer camps across the country. At MDA camp, thousands of kids with muscle disease discover a world where barriers don’t exist, and they meet many other kids sharing the same needs and experiences. It’s a place where kids can just be kids, as they build lifelong friendships and gain increased self-confidence.
|Steven M. Derks|
And thanks to the support of our vast MDA community — families, volunteers, donors, national partners and staff nationwide — we are making our kids’ dreams come true every year. MDA campers dream about summer camp all year and often say it’s better than Christmas; some even say it has changed their lives. Almost all campers agree it’s “the best week of the year.” That’s what MDA is all about: saving and improving lives.
And as we look ahead to the MDA Show of Strength Telethon on ABC-TV this Labor Day weekend, I’m convinced that MDA’s mission is more important than ever. There has never been a more promising, hopeful time in our fight against muscle disease. Because of your support, we are experiencing an incredible period of progress on many fronts.
For instance, after years of MDA research investment, advocacy and follow-up development by biopharmaceutical companies, the U.S. Food and Drug Administration announced this spring it will consider accelerated approval for eteplirsen and drisapersen, two drugs specifically developed for 13 percent of boys fighting Duchenne muscular dystrophy. These landmark developments come as a result of MDA’s willingness to take a risk by funding early-stage research on a strategy called “exon skipping” in the late 1990s. Our steadfast funding for exon skipping allowed Australian molecular biologist Steve Wilton and Dutch molecular biologist Judith van Deutekom, both pioneers in this field, to pursue their ideas and concepts.
In looking at the larger picture, this development is representative of MDA’s overall commitment to investing in scientific and medical research. Since the 1980s, both life expectancy and quality of life have improved for children and adults with muscle disease. And more new drugs are expected in the next five years than in the previous five decades. That translates to progress, and with that comes a renewed hope that new treatments and therapies — and someday cures — are closer than ever.
MDA’s life-enhancing and lifesaving mission is fueled by you, our loyal supporters in the battle against muscle disease. So keep showing your muscle in the fight against muscle disease: Thank a fire fighter holding up a boot at a busy intersection, attend a local Show of Strength Telethon premiere party, go to jail for “good” by participating in the MDA Lock-Up, and thank retailers that display MDA mobiles or that participate in MDA’s Aisles of Smiles program. And, of course, please give what you can. There’s a long road ahead of us and more work to be done. This summer, let’s rally the MDA team and keep the momentum going.
Steven M. Derks
President and CEO
Muscular Dystrophy Association