December 13, 2002

WHERE HOPE BEGINS

“Where Hope Begins” is the title of a new 8-minute video presentation produced by MDA to help educate the public about the importance of the work our Association does in its ongoing mission to eradicate neuromuscular diseases.

You can view this lively and informative video in its entirety here on MDA’s Web site.

Perhaps the most moving aspect of the video has to do with the testimonial remarks by members of families fighting progressive neuromuscular diseases. Such individuals include Sam Williams, a youngster from Matthews, N.C., who has Charcot-Marie-Tooth disease and speaks about the help he’s received from his local MDA clinic, and Nora Jimenez of Houston, who discusses the importance of information provided by MDA to her family in helping her son Gerardo face the challenges of Duchenne muscular dystrophy.

Motivational speaker Rob Roozeboom, who has limb-girdle muscular dystrophy and lives in Sheldon, Iowa, refers to the importance of MDA’s research program when he says: “I still live in the hope that there will be a cure.”

It’s moving to know these families derive help and hope from MDA. Contemplating the words spoken in this video instills in us a renewed sense of the urgency of conquering the destructive disorders we’ve pledged to defeat.

Other words, spoken outside the confines of our new video, offer similarly inspiring sentiments, such as those spoken by 12-year-old Mattie Stepanek, the best-selling poet from Rockville, Md., who will shortly commence his second year as MDA National Goodwill Ambassador.

Mattie, who’s fighting a form of mitochondrial myopathy, which previously took the lives of his three siblings, recently said:

“Sometimes my body wakes me up and says, ‘Hey, you haven’t had pain in a while. How about pain?’ And sometimes I can’t breathe and that’s hard to live with. But I still celebrate life and don’t give up.”

Indeed, celebrating life despite the severe challenges it presents is a major theme in Mattie’s poetry, as reflected in the title of his latest poetry book, Celebrate Through Heartsongs.

(By the way, this latest outstanding collection from Mattie features an introduction from none other than MDA National Chairman Jerry Lewis. Jerry has faced his own set of daunting health challenges in recent times and inspired us all several months ago with his superb starring performance on our 2002 Jerry Lewis MDA Telethon.)

It’s hard not to be moved by the spirit and strength of character shown by youngsters such as Mattie — or by similar qualities when demonstrated by adults such as Steven Bishop of Arvada, Colo., and his wife, Jennifer. Steven has ALS.

Following their moving appearance on this year’s Telethon, this attractive and eloquent couple graciously consented to serve in the important role of co-chairs of MDA’s ALS Division.

Despite the uncertainty that ALS imposes on their lives, Steven and Jennifer are anchored by their mutual affection and by their love for their son, Christopher.

"I just want to be around long enough to influence him the way I think as a dad I can influence him and share his milestones,” says Steven of his son. “I just hope I last long enough to do that."

Jennifer recalls the period after Steven received his ALS diagnosis.

“The day after we found out about Steven, I took my watch off and said, ‘The time on the clock is not going to control me anymore. Our time together is not measured by hours or years, it’s by memories.’”

I know I’m not alone in deriving inspiration from the great inner strength shown by these remarkable individuals. The place where hope begins may be MDA but it’s also in the hearts of people like the Bishops, Mattie Stepanek, the Roozebooms, the Jimenezes, Sam Williams — and others too numerous to mention.

With the holidays upon us, I want to extend thanks to everyone who has generously supported MDA’s mission during 2002. Your support is really making a difference. If you haven't contributed to help MDA, it’s not too late to make a year-end donation right now.

Peaceful and happy holidays to all.

With every best wish...

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