February 10, 2004

ON MDA AND THE CIRCLE OF HELP

It’s far too simple a thing to say that MDA helps people with neuromuscular diseases.

Sure, that’s a true statement, and one I’d stake my life on. But it omits a very important dynamic that helps make the Muscular Dystrophy Association tick as an organization.

Many of the people who help MDA — who in fact make it possible for us to function in communities nationwide — are also those served by MDA. I’m talking about the individuals, young and old, who are affected by neuromuscular diseases and look to MDA’s programs of research and health care services to help them in their daily battles. Their voluntary support of MDA helps create a kind of recurring cycle of help and encouragement that strengthens and empowers all the parties involved.

	Mattie Stepanek

A shining example is that of our extraordinary 13-year-old National Goodwill Ambassador, poet-philosopher Mattie Stepanek. Mattie, who’s lost three siblings to a mitochondrial disorder that now threatens his own life, faces challenges few of us can begin to fathom in our darkest imaginings. Even as this column goes online, he’s fighting bravely against serious symptoms of his disease progression and is once again hospitalized.

Mattie has spoken any number of times of the hope that he and his mom receive from knowing that MDA-funded research is forging ahead in the quest to defeat mitochondrial diseases of muscle. He’s also written about his love for the MDA summer camp program and has expressed his belief that it provides the best week of the year for “Jerry’s kids.” (See my previous report ”Regarding One Child’s Perspective on Summer Camp.”)

Mattie is determined to continue with his public appearances as his medical situation allows. Over the last two years, this precious young man has done an exemplary job for us in his role as Ambassador, inspiring millions of Americans and winning new supporters to MDA’s important cause.

Glenn Harwood

Then there are others such as Glenn Harwood. Harwood, a procurement analyst in the U.S. Small Business Administration, a federal bureau that provides financial, technical and management assistance to help Americans start, run and expand their businesses, received a diagnosis of amyotrophic lateral sclerosis (ALS) in 1994, although symptoms started as early as 1990. Despite the need to use a power wheelchair and the loss of his vocal powers, Harwood maintains a successful career and an active lifestyle, along with an upbeat attitude about life. As an ice-breaker, he carries with him and distributes by e-mail a weekly joke sheet called “Can't Walk or Talk, But Can Always Laugh.”

Harwood is a devoted husband, father and grandfather, and attends the MDA ALS support group in Baltimore.

Nine years ago, for his 55th birthday (Aug. 11), Harwood asked that, in lieu of gifts, his friends make donations to MDA designated to support ALS research. He’s repeated the request every year since. Last year, the 9th annual Glenn Harwood birthday mailing was a huge success, raising more than $18,000 to benefit MDA, bringing his 9-year total to more than $120,000.

I won’t dare to guess what Glenn Harwood’s 10th birthday mailing will bring in during 2004. I’ll only say that MDA is deeply grateful to this remarkable man for giving back to MDA in this memorable way — and thereby helping to speed the day when this terrible disease will be nothing more than an artifact of medical history.

	Nicholas Johnson

Nick Johnson, 39, lives in Waltham, Mass., and has Friedreich’s ataxia. An accomplished engineer, Johnson is the current recipient of the MDA National Personal Achievement Award. Johnson, who’s also a skilled public speaker, will be making appearances in behalf of MDA and taking part in MDA fund-raising events throughout the year.

Many other individuals are giving back to MDA in significant ways, including the members of our National Task Force on Public Awareness, artists who contribute works to the MDA Art Collection, and families who take part in MDA local chapter activities and fund-raisers.

Let’s also not forget to pay tribute to our state and local goodwill ambassadors who are beginning their new terms in localities across the country. These youngsters put a human face on MDA’s mission and dramatically illustrate the importance of our work in local communities

I’m extremely grateful to all of these members of the MDA family, who I believe embody the very notion of having a proactive, positive attitude. Combine their support with the generous help we receive from members of the public who aren’t affected by neuromuscular diseases, and you’ll see why there’s great reason to hope for a better future — one in which humankind will gain a firm upper hand over these destructive disorders.

With every best wish...

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