April 12, 2000

REGARDING EXTRAORDINARY FAMILIES THAT GIVE BACK TO MDA

Our Association was established in the early 1950s with the objective of providing help and hope to families fighting progressive and often fatal neuromuscular diseases.

How remarkable it is, then, that some of these families, despite the immense personal challenges they face on a daily basis, manage to become not just recipients but sources of help and hope to benefit others.

One such family is that of Bill Quinn Jr. of Massachusetts. Quinn was an athlete and sports enthusiast who was vice president of W.J. Quinn Inc., a family contracting, building and construction business. His interests included golf, skiing, weight lifting, reading, political analysis and travel.

Bill Quinn Jr.

Quinn was in his early 30s in 1991 when he received a diagnosis of amyotrophic lateral sclerosis (ALS), the devastating motor neuron disease that often proves fatal in only a few years.

To strike back at ALS, Quinn's family members chose to create a fund-raising event in Quinn's honor to help MDA's fight against the disease. They called it "ALS Taste of Fame" and planned it for Oct. 4, 1997.

The event, which had a sports theme in honor of Quinn's love of athletics, took place at the Basketball Hall of Fame in Springfield. Twenty-five local restaurants provided hors d'oeuvres, while six beverage companies provided wine and beer. Sports memorabilia were auctioned off.

The event was a tremendous expression of love for Quinn from his family members and from his community. It was also a great success, raising $92,000 to support MDA's war on ALS.

After the event, the Quinn family wrote a letter to MDA, saying: "What began for us as a personal way of showing our love and support for our brother turned into much more. Before long our motivation began to extend far beyond our own family. If every family affected by ALS did what they could to raise funds and awareness of this disease, we would be that much closer to finding a cure."

Quinn waged a courageous battle against ALS but lost the fight in December 1997 at age 38. His family was glad he was able to witness the success of the first "ALS Taste of Fame" before his death.

That was only the beginning, not the end, of the Quinn family's fight against ALS. The family has continued to coordinate, with MDA staff, the "ALS Taste of Fame" as an annual event in Quinn's memory, with greater success every year. The 1999 event had approximately 1,000 people in attendance and raised $100,000 to benefit MDA.

The family of Bill Quinn Jr.: sister Dianne Williamson, parents Mary and Bill Quinn, and sisters Marianne DeSimone, Kathy Mellis and Jodi Quinn.

Dianne Williamson, one of the four sisters of Bill Quinn Jr. who are the prime motivating forces behind the event, appeared on our local broadcast of the Jerry Lewis MDA Telethon on WGGB in Springfield to say this: "Everything happens for a reason. When I questioned what reason could there be for my brother to suffer six long years with this terrible disease, I have to think that God knew that the Quinn family would fight to find a cure!"

The fourth annual "ALS Taste of Fame" is scheduled for Oct. 21, 2000, in Springfield. Call MDA at (413) 567-5500 for more information.

Fortunately, there are many instances across the county of MDA events created around remarkable individuals affected by neuromuscular diseases.

Supermodel Kathy Ireland was a friend to Howard Thomas and a supporter of his San Pedro "Sampler" to benefit MDA.

Another was the "Howard Thomas San Pedro Sampler" to benefit MDA, a gourmet wine and food tasting event coordinated by a young man with Duchenne muscular dystrophy who lived in San Pedro, Calif. Due to the severe progression of his Duchenne, by the time he was 30 Thomas was using a power wheelchair controlled by a mouth device, as well as a ventilator and a feeding tube, and he had developed serious heart problems. But his spirit and determination remained undiminished.

Thomas was resolute in his desire to help MDA and succeeded in mounting the first "Sampler" event in 1993. (See the Quest article about the event in Vol. 5, No. 1). Possibly because his daily life presented so many extraordinary challenges, Thomas was relatively unfazed by the difficulties of recruiting local restaurants or approaching celebrities to be part of the event. Supermodel Kathy Ireland and broadcasting legend and MDA National Vice President Casey Kasem were among those who answered Thomas' call and got involved.

The annual event became Thomas' main raison d'être for five years. In 1998, while the sixth "Howard Thomas San Pedro Sampler" was still in the planning stages, Thomas died of his Duchenne. There was no "Howard Thomas San Pedro Sampler" in 1999; currently, however, friends and MDA staff are hoping to revive the event in Thomas' memory.

We're deeply grateful to families and individuals who have given back to help MDA in this remarkable fashion. We look forward, along with these families, to the day when neuromuscular diseases will be conquered and the need for such outstanding and caring efforts will be lifted once and for all.

With every best wish . . .

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