November 21, 2001

ON GIVING THANKS IN TIMES OF CRISIS

Although 2001 will always be remembered as a "year of terror," and although neither the year nor our national travails can be said to be over, I want to use this column to take stock of things that I can feel particularly grateful for.

Living in crisis mode is something that is not new to families served by MDA, whose personal situations can change at any time due to the further progression of neuromuscular disease. These families will tell you that counting the blessings one has can be a powerful way of shoring up the reserves of strength and courage that are needed to face the unknown challenges each new day may bring.

One recent event that has made me, as president of MDA, particularly grateful — although "overjoyed" might be a more accurate word — was the formal passage last week by the full Senate of the Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001 ("MD-CARE Act"), which the House of Representatives had unanimously passed on Sept. 24.

This historic piece of legislation authorizes the National Institutes of Health (NIH) to expand its research seeking treatments and cures for the nine different forms of muscular dystrophy.

I’m proud that advocacy efforts on the part of MDA national volunteer leaders — including MDA National Chairman Jerry Lewis and MDA National Vice President Ed McMahon — helped push this vitally important legislation through. We hope to see the MD-Care Act signed into law by President Bush as soon as possible, so that 2002 can be a year in which the United States government and MDA carry forward their separate but complementary research initiatives to vanquish the muscular dystrophies.

Speaking of Jerry Lewis, I’m extremely grateful for our national chairman and Telethon host’s continued devotion to MDA’s cause, which dates back to the early, formative days of the Association. Without Jerry’s wholehearted efforts in behalf of "his kids," the remarkable progress we’ve seen in uncovering the causes of neuromuscular diseases would have been unthinkable. Jerry remains a hero to millions and one of the most singular examples of devotion to a philanthropic cause in modern history.

I want to extend thanks also for the ongoing guidance and support we receive from the many other MDA volunteer leaders on the national, state and local levels, including MDA Board members, national vice presidents, members of MDA’s National Task Force on Public Awareness, MDA chapter officers, general managers of our MDA "Love Network" stations, MDA clinic directors, MDA sponsor representatives, Telethon and fund-raising volunteers and outstanding spokespersons such as MDA National Goodwill Ambassador Sarah Schwegel and MDA National Youth Chairperson Mandy Van Benthuysen.

I’m gladdened by a recent flurry of promising activity in research seeking better treatments and a cure for amyotrophic lateral sclerosis (ALS), one of the most destructive disorders in MDA’s program. These studies include new evidence that a protein called EAAT2 has potential to extend lifespan well beyond the limited capability of the currently approved ALS treatment, Rilutek.

I’m thankful, too, for high profile fund-raising events such as the recent "Wings of Hope" dinner-auction at the Tavern on the Green restaurant in New York which raised hundreds of thousands of dollars specifically for MDA research and services directed for people with ALS, and which garnered the support of celebrities such as actors Stephen and Billy Baldwin.

Considering the trauma New Yorkers have undergone, we must count ourselves doubly fortunate to continue to receive this kind of fulsome, good-hearted support from the "Big Apple."

I’m grateful for the fact that earlier this year MDA was able to increase to $500 the annual amount it provides for repair of a wheelchair or set of leg braces for people registered with the Association.

And it goes without saying that I’m heartened and filled with thankfulness for the American public’s phenomenal outpouring of support for our most recent Jerry Lewis MDA Telethon, which raised a record-breaking $56.8 million in contributions and pledges to further MDA’s mission to eradicate neuromuscular diseases.

And, on a seasonal note, I’m encouraged by the large numbers of orders MDA has received for offerings from its 2001 Holiday Wishes card collection, which features festive greetings created by artists represented in the MDA National Art Collection.

The excellent public response we’ve received is due in part to a free notice placed in Newsweek magazine. This year, six new works by artists affected by diseases in MDA’s program have been selected to appear on MDA holiday cards.

It’s still possible to obtain cards by calling (800) 223-6011 or ordering online here on MDA’s Web site.

We hope you and yours will experience a holiday season full of warmth and positive tidings — and many moments to celebrate and express thanks for.

With every best wish…

The Ross Report Archive