November 22, 2005

ON MANY REASONS TO BE THANKFUL IN 2005

With the holiday season upon us, it occurs to me that there are many things that those of us at MDA can be grateful for -- including the support of outstanding people whose talent and dedication make our work at MDA possible.

	MDA National Chairman Jerry Lewis hosted the 2005 Jerry Lewis MDA Labor Day Telethon.

Foremost among them is MDA National Chairman Jerry Lewis, who performed the titanic task of hosting our 2005 Telethon with all the charisma, humor and passion we’ve come to expect from him. This year’s Telethon admirably fulfilled its traditional purpose of generating funding for MDA’s programs in research, health care and summer camp for youngsters, while also raising funds and awareness to alleviate the near cataclysmic circumstances which were unfolding in the Gulf states devastated by Hurricane Katrina.

And while on the subject of the Telethon, I want to express the profound admiration of all of us at MDA to Jerry’s remarkable on-air national Telethon team, including anchor Ed McMahon and co-hosts Jann Carl, Cynthia Garrett, Norm Crosby, Larry King, Billy Gilman, Bob Zany and Tom Bergeron

	Six-year-old Morgan Fritz, seen here with her parents, Ron and Sue, serves as MDA National Goodwill Ambassador.

For help in supporting MDA’s activities year-round, I’m deeply thankful for the involvement of key MDA volunteers and spokespeople, including the family of our 6-year-old National Goodwill Ambassador, Morgan Fritz. This delightful young lady, who has spinal muscular atrophy, has won countless new friends and supporters for MDA. Morgan and her mom and dad have been doing a spectacular job this year, traveling the country and making appearances to promote understanding and awareness of MDA’s ongoing fight against more than 40 neuromuscular diseases.

Thanks are due as well to the other families affected by neuromuscular diseases who generously agree to appear on our Telethon both locally and nationally. Without their courage and selflessness in being willing to share their moving stories with our audience, we’d be unable to convey the dimension of the personal human drama that underlies MDA’s mission.

	Award-winning singer Billy Gilman talks to young people across America in his role as MDA National Youth Chairman.

Some MDA volunteer leaders deserving of acknowledgement and tribute are the co-chairpersons of our ALS Division, Chris and Reda Rice; award-winning singer and MDA National Youth Chairman Billy Gilman, who I mentioned earlier; and the members of MDA’s National Task Force on Public Awareness, a voluntary advisory body consisting solely of high-achieving individuals affected by the diseases in MDA’s programs.

MDA could also not carry on its diverse and comprehensive programs without the guidance and support of members of MDA’s Board of Directors and MDA’s National Vice Presidents. Their often long-standing service is deeply appreciated, as are the many talents they bring to support our mission.

Special thanks to MDA National Vice President Jeni Stepanek, whose ongoing involvement with our Association assures that we’ll continue to be inspired and guided by the legacy of hope, peace and love left to us by her remarkable son, the late child poet and MDA champion Mattie Stepanek.

	Dr. R. Rodney Howell serves on MDA’s Board of Directors and as chairman of its Scientific Advisory Committee, which oversees MDA’s research funding allocations..

The allocation of MDA research funding and the coordination of MDA health care services rely heavily on direction given by two voluntary bodies composed of leading experts in neuromuscular science and medicine: MDA’s Scientific Advisory Committee, chaired by Dr. R. Rodney Howell, and MDA’s Medical Advisory Committee, headed by Dr. Leon I. Charash.

In addition, MDA’s Translational Research Committee deserves recognition for the work it’s undertaking to streamline the development of new therapies by moving promising new agents into clinical trials as rapidly and efficiently as possible.

Speaking of MDA research, I’m heartened by the encouraging series of advances that took place during the year. These developments are too numerous to list in full, but include the finding that cardiac outlook is improved by early diagnosis and treatment of cardiomyopathy in the Duchenne and Becker forms of muscular dystrophy; advances that bring us closer to clinical testing of the drug PTC 124 in boys with Duchenne; ongoing cooperation between MDA and the Genzyme Corporation in testing a promising experimental drug for acid maltase deficiency or Pompe’s disease; further progress in study of the growth factor VEGF in combating ALS; and increased sophistication in determining dosage amounts of the drug prednisone in treating those with Duchenne.

Other encouraging research developments include cooperation between MDA and the NIH in studying a drug called somatokine as a potential treatment for those with myotonic dystrophy; an advance by an MDA-funded research team at Stanford University in determining the substance hydroxyurea’s potential in promoting the body’s production of SMN1, a protein needed but deficient in spinal muscular atrophy; the finding by an MDA-funded research team in Ohio that treatment with the substance neurotrophin 3 improved sensory function and nerve regeneration in Charcot-Marie-Tooth disease; the announcement that a multi-center study of the experimental compound arimoclomol for use in treating ALS will begin in early 2006, with several MDA-funded clinicians participating; and other advances that signal hope in the forging of new medical approaches to managing neuromuscular diseases.

I’m deeply grateful for the brilliant, dedicated and often undersung scientists and clinicians who are putting their hearts and minds in service to making life better for those MDA serves.

What’s more, I must acknowledge the extraordinary, compassionate support of the companies and organizations that serve as MDA’s national sponsors. National sponsors such as the International Association of Fire Fighters, Citgo, Acosta and others have taken MDA’s cause to heart in remarkable fashion. It was a privilege this year to acknowledge on the Telethon the 25th anniversary of MDA’s partnership with one of these tremendously dedicated sponsors, the Harley-Davidson Motor Company. Caring members of the Harley-Davidson family outdid themselves this year in behalf of “Jerry’s kids”; the 18th Annual Ride for Life, which took place in May in Reading, Pa., raised an awe-inspiring $764,818, the largest amount raised for charity in the United States by an event of this type.

All of us in the Telethon family were naturally delighted that in 2005 Jerry Lewis received the Academy of Television Arts & Sciences Governors Award, in recognition of his work with the Telethon in behalf of “his kids.” This was a fitting and appropriate honor, one that has been awarded in the past to such luminaries as Bob Hope, Walter Cronkite and Johnny Carson. The question still remains, though: When will Jerry Lewis receive the Oscar he deserves?

Many MDA supporters who are old enough to remember the 1960s and 70s will join me in celebrating the return in 2005 of MDA’s classic carnival program for children, complete with a brand new slogan, “It’s Cool to Care!”

I’m also glad that MDA’s National Art Collection, consisting solely of creative works by children and adults affected by neuromuscular diseases, is still delighting art lovers nationwide. Some 36 works from the Collection are currently on display at the Sheldon Art Galleries in St. Louis.

I may have only scratched the surface in listing all the valued friends and organizations who help MDA administer its comprehensive programs, and I apologize to any I’ve unintentionally omitted. Perhaps most of all, I need to express thanks to the American people for continuing to back MDA’s lifesaving mission.

With their compassionate support, MDA is making encouraging progress in the quest to vanquish neuromuscular diseases. And that’s something for which we can all be profoundly grateful.

With every best wish . . .

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