71° Good Afternoon
71° Good Afternoon

The muscular dystrophy telethon now just a memory

Jonathan Kempf of Kings Park, left, son of

Jonathan Kempf of Kings Park, left, son of writer June Capossela Kempf, with golfer Craig Sussillo of Smithtown in the early 1980s. Sussillo played golf for 24 hours straight at the Smithtown Landing Country Club to raise $1,700 for the muscular dystrophy telethon. Jonathan died as a result of muscular dystrophy in 1996 at age 21. Photo Credit: Muscular Dystrophy Association

As Labor Day approaches, people keep asking me, "What happened to 'Jerry's kids'?" Even more disturbing, others ask, "Who is Jerry Lewis?"

The fact is, Jerry's kids, children who suffer from the degenerative disease muscular dystrophy, are still here. However, Jerry Lewis, the entertainer revered for the amazing national telethon he hosted each Labor Day from 1966 to 2010, seems nearly forgotten. This year, for the first time since 1956, there is no telethon for the Muscular Dystrophy Association. Our crew of Suffolk telethon veterans was set adrift a few years ago.

My husband, Ron, and I were telethon volunteers from 1980 to 2010. I was the last president of the Suffolk County Muscular Dystrophy Association. Our family got involved because our son Jonathan had a form of the disease called Duchenne muscular dystrophy. His muscles deteriorated and would not function. He died in 1996 at age 21.

The telethon gave us purpose and hope. We participated in fundraisers all year -- school "hop-a-thons," dog walks, golf tournaments and fashion shows. The events provided precious moments for children with the disease to bond -- to feel wanted.

From 1986 to 1990, WBAB radio sponsored weekend "roof-a-thons" at Long Island 7-Elevens. Volunteers sought to "raise the roof" by raising donations. In Melville, they bravely sought spare change from drivers at red lights on Route 110. They came back with baskets filled to the brims.

There were some humorous moments. At a 1995 dog-walk fundraiser at Blydenburgh Park in Hauppauge, our party of about 10 got lost in the woods. Rangers on horseback found us.

Each Labor Day, Suffolk's volunteers covered more than 21 hours of the telethon. At the Sheraton hotel in Hauppauge, TV screens loomed above phone banks as we took donor calls and reported pledge totals to telethon headquarters in Las Vegas every half hour. When a caller offered $1,000 if she could speak directly to Jerry Lewis, a volunteer grabbed the phone and mimicked Lewis' voice -- "Hello, ladeee?" We got the pledge.

Afterward, we rushed pledge forms to the Melville post office. The mailing was given high priority so donors received them before they could change their minds.

Then, about five years ago, like the insidious disease we were fighting, the end snuck up. Telethons were going out of vogue. Volunteers lost interest, venues withdrew and donations dropped. From raising more than $300,000 a year at our peak in Suffolk, our tote board showed a gradual decline. A major blow came when a local firehouse ended a popular fundraiser. Low-paid local coordinators were held responsible for the chapter's failure. Personnel turnover escalated and suspicion of reorganization by the Muscular Dystrophy Association surfaced.

A regional office in Connecticut told me that Suffolk's office was not closing. But when we arrived for a meeting, we were shocked to find it locked and empty. We were encouraged by regional officials to join the Nassau chapter. The Suffolk group was told it wasn't needed.

Labor Day 2010 saw Lewis' last telethon. Today, he's unrecognized by the younger generation.

Perhaps changes were inevitable. Technology brought newer, more efficient ways to raise money. The MDA is still a major sponsor of services and research into neuromuscular diseases, but the telethon has gone the way of the trolley. Only cherished memories remain for old-time Long Island "telethon people" like us.

Reader June Capossela Kempf lives in St. James.


We're revamping our Comments section. Learn more and share your input.