September 15, 2004

ON TELETHON 2004’S $59.4 MILLION ACHIEVEMENT, DESPITE THE DEVASTATION OF HURRICANE FRANCES

Telethon 2004, like many other Jerry Lewis MDA Labor Day Telethons before, ended amid tears, laughter and a hail of confetti. The 21 ½-hour broadcast, which presented entertainment by the likes of Elton John, Celine Dion, Josh Groban, Billy Gilman, Maureen McGovern, Debbie Reynolds, Steve Lawrence, Jack Jones and many more, as well as information on the daily battles being waged by families affected by neuromuscular diseases, resulted in a pledge total of $59,398,915.

As impressive as this figure seems, it fell short of last year’s total of $60.5 million, thus preventing MDA National Chairman Jerry Lewis from attaining his oft-stated goal of raising just “one dollar more.”

This decline from a previous year’s total, something that happened only once before in the Telethon’s history (during the recession of the early 1980s) was clearly and unavoidably the result of a factor that was out of the hands of our Telethon production crew and of our MDA families -- the chaos and destruction wreaked by Hurricane Frances.

Over Labor Day weekend, Frances hit Florida, causing at least 15 fatalities in the state as well as extensive flooding and property damage. Our hearts go out to the families who have suffered due to this and other storms of recent months, and who are currently bracing for the arrival of Hurricane Ivan. In particular, our sympathies go out to those families affected by neuromuscular diseases in the region, along with our assurances that MDA services will continue to be made available.

One of the effects of Frances was to shut down local television programming, which meant that local segments emanating from our MDA “Love Network” stations in Florida could not air. In addition, evacuations and other emergency measures deprived the Telethon in Florida of pledge centers, volunteer support, sponsor participation and viewership.

Frances also made it impossible for the family of 13-year old Ivan Garcia of Miami to arrive for two scheduled live appearances on our national broadcast. MDA regrets that the family was not able to be on the show live, but we’re glad that the beautiful video profile about Ivan and his family, which was shot several months back, could be aired twice during the Telethon.

The blow dealt us by Frances meant the loss of millions of dollars of Telethon revenue, making it impossible to surpass our 2003 total. That we came as close as we did to matching that figure was due to a number of factors, including the public’s overwhelming response to the fact that Telethon 2004 was dedicated to our much-loved MDA National Goodwill Ambassador, Mattie Stepanek.

Jerry Lewis MDA Telethon co-host Jann Carl (left) interviews Jeni Stepanek, mother of Mattie Stepanek, MDA’s National Goodwill Ambassador, best-selling poet and peacemaker who died of muscular dystrophy at age 13 in June. Jeni Stepanek said she is determined to carry on her late son’s crusade to find treatments and cures for neuromuscular diseases.

The celebrated child poet, who had a rare mitochondrial disorder, died on June 22. And yet his presence was felt throughout the 2004 broadcast, in large part due to the participation of his mother, Jeni Stepanek.

Jeni appeared live on the broadcast at pivotal moments in the first and last hours, introducing footage that commemorated Mattie’s life and his remarkable tenure with MDA.

Despite the overwhelming emotions that inevitably resulted while discussing the tragic loss of this brilliant youngster, Jeni -- along with Jerry Lewis, Telethon Anchor Ed McMahon, and Telethon Co-hosts Jann Carl, Larry King and Billy Gilman – managed to keep a positive focus while remembering Mattie.

Jann, echoing a sentiment I expressed in my previous Ross Report column, said we shouldn’t just remember Mattie but emulate him, especially his philosophy of celebrating life and “playing after every storm.”

And though it’s surely no easy task to talk about the loss of a beloved child, Jeni spoke of her beautiful son with strength and honesty and even humor, doing full justice to his remarkable spirit. Whether recounting his final months battling his disease -- which she described as “agony” -- or recalling his love of practical jokes at MDA summer camp, she helped evoke Mattie’s full, rich humanity in all its splendor.

Many of us — myself included -- who worked on Telethon 2004 remained awake and in attendance for the entire 21 ½-hour duration. Jeni chose to do this as well. Her constant presence in the front row of our studio audience helped motivate all of us to do the best show possible in Mattie’s memory.

In addition to expressing appreciation to Jeni, I want to extend deepest thanks to the youngsters affected by neuromuscular diseases who appeared on the live broadcast with their families, including 10-year-old Natalie Lomske of Northville, Mich... 13-year-old Corbin Brey of Pewaukee, Wisc… and 5-year-old Morgan Fritz of St. Peters, Mo. Without exception, each of these families had a powerful impact on our viewership and ably conveyed the urgency and importance of MDA’s effort to defeat neuromuscular diseases.

Congratulations to Chris and Reda Rice of Houston. Chris has amyotrophic lateral sclerosis (ALS) and he and Reda serve as co-chairpersons of MDA’s ALS Division. In a return live appearance following a showing of their Telethon profile, Chris delivered eloquent remarks via the augmentative communication device he uses to compensate for the effect ALS has had on his vocal powers. Reda made a heartfelt speech declaring her personal faith that the efforts of those such as Jerry Lewis and Dr. Stanley Appel, director of the Ronny and Linda Finger MDA ALS Center in Houston, will surely lead to the conquest of ALS.

My thanks also to two important friends of MDA, Chris Rosa and Tom Bush. Chris, who has Becker muscular dystrophy, is a member of MDA’s Board of Directors and serves on MDA’s National Task Force for Public Awareness. Tom, who has spinal muscular atrophy, served as MDA’s Director of Online Services for 10 years before retiring and is still an active MDA volunteer. Chris and Tom presented an excellent segment on Telethon 2004 about the role of MDA-funded research in helping to maximize the abilities of those MDA serves.

In the segment, Tom recalled: “When I received my diagnosis about 55 years ago, long before this Telethon existed, the best that science could tell my parents was: ‘Your son has some sort of neuromuscular disease and you should not expect him to live longer than 21 years.’ Right now, I’m in my 63rd year of life. In addition to being alive and having children and grandchildren, I also have a name for my disease: spinal muscular atrophy, SMA type 3. Not only that. Now, thanks to MDA-funded research, scientists can pinpoint the exact genetic deficiency causing my disease, and are conducting clinical trials seeking treatments for another form of SMA that is life-threatening for young children.”

In this column I’ve kept my focus on the role played in Telethon 2004 by those affected by neuromuscular diseases, but there are many others who deserve thanks and recognition for our Telethon success, including our performers and co-hosts… sponsor representatives… MDA-funded scientists and clinicians… Telethon volunteers… “Love Network” station personnel… and many, many more.

Our National Chairman and number-one volunteer, Jerry Lewis, deserves tremendous praise for hosting a memorable Telethon broadcast – his 39th to be exact! -- that was as entertaining as it was educational and inspiring.

Jerry, whose obviously improved health since the previous year was a source of joy to many viewers, has promised to put on a bigger and better show next year. And who can doubt that he’ll succeed once again then in attaining that “one dollar more”? Certainly his unparalleled passion for helping “his kids” will compel him, as it always has, to strive for nothing less.

In closing, I want to share some words from a note that was received by one of our staff, MDA Director of Community Programs Mike Blishak, shortly after the Telethon. It was written by the mother of MDA’s 2001 National Goodwill Ambassador, Sarah Schwegel. Sarah, many will recall, is one of the most radiant children who has ever served in that distinguished role.

Sarah’s mom, Sandy, wrote: “It doesn't really matter to us if we go over $1 or not. What matters is your continued love, devotion and support. It's the PEOPLE of MDA that give us hope. That's what it's really all about, and we thank you and all the staff of the MDA for everything. We love you and everyone from MDA who worked so very hard this Labor Day weekend. You are our heroes, right up there with Mattie and the firefighters.”

Amen, and thanks to Sandy and everyone who continues to put their faith and hope behind our Telethon’s vital, ongoing mission.

With every best wish...

The Ross Report Archive