Community Corner

Lions Club Golf Outing Raises Money for Disease Research

The Yorktown Lions Club 7th annual golf outing raises money for research for Friedreich's Ataxia.

When Donovan Simpson was diagnosed with Friedreich's Ataxia at the age of seven, his parents were told he would live only until his teens. But Norman and Debra, of Yonkers, don't know what will happen because of new developing research on the disease. They say their son, now 13 years old, is progressing. But their spirit and attitude remain positive.

Friedreich's Ataxia (FA) is an aggressive neurodegenerative disease that debilitates people of all ages. The disease takes away their ability to walk, see, speak and hear. Currently there is no cure or treatment, but research and new clinical trials are under way to slow down and prolong the disease.

The Yorktown Lions Club partnered with Outback Steakhouse to fundraise money for The Friedreich's Ataxia Research Alliance (FARA) during their 7th annual golf outing on Monday. FARA was founded in 1998 by parents to fund research for Friedreich's Ataxia.

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Donovan said he does not want the disease to defy who he is, and if he could find a cure for it, he would. He said seeing people get together to raise money makes him happy.

"That makes me feel really happy and good inside," he said.

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Half of the proceeds go toward the Lions Club and the organizations it supports, and the other half goes toward FARA. Approximately $30,000 will be donated to the organization through the fundraiser.

The golf outing brought in 119 people, who each paid $300 to play golf in teams of four. Then for $50 they had dinner, provided by the Outback Steakhouse, and some golfers won prizes and participated in silent and live auctions. Auctioned items included signed baseballs and bats, other sports memorabilia, trips, concert tickets, a Montauk fishing day trip, and more. This year, there were 100 sponsors and over $25,000 worth of prizes, raffle tickets, and auction items. 

"It's such a fun fundraiser," Lions Club Member Bill Marks said. "Without these people coming in and paying these money we couldn't do it."

The golf outing fundraiser started in 2004 as a competition between Lions Club members to see who would raise the most money. It grew to be their largest event for the year. Here men and women played golf, ate and drank, won prizes and raised money for a good cause.

"We love to support the Yorktown Lions," said Alan Leon, who was participating in the golf outing for the second time and said he was already looking forward to next year's.

"Lions Club is always donating money to charity organizations," said Bill Jablonski of Yonkers Outback Steakhouse. "Outback likes giving back to the community and it partners well with the Lions Club whose goal is the same."

Anthony DeVito and Ron Duckstein, members of the Lions Club, started the Golf Outing as their main fundraiser. All proceeds go to support local families, individuals, and organizations.

"100 percent goes back to the community," DeVito said.

Duckstein said Freidrich's Ataxia is a relatively new diagnosed disease and the money raised make a big difference. The genetic cause was discovered 13 years ago. The gene is recessive and it takes two genes, one from each parent carrying it, to generate FA. Although research is young, breakthroughs are being made and those breakthroughs may even have an impact on other related neurological diseases, Duckstein said.

One in 50,000 people are diagnosed with Freidriech's Ataxia, where typically children between the ages of five and 15 are diagnosed for the first time. Freidreich's Ataxia reduces the energy in cells, and Donovan's parents said he was given the drug Idebenone for energy, which has been working, but after a recent clinical trial concluded, there was no way to measure the increase in energy. Now FARA will be starting other clinical trials, for which more funding is needed. $5,000 would fund the expenses for one person to go to a clinical trail, Norm Simpson said. Clinical trials are costly and most fail due to insufficient patient participation. 

Despite Donovan's physical limitations, he is in a wheelchair and successfully underwent a scoliosis surgery, he has done and seen things most kids his age or even adults don't get to do or see. His parents have taken him to various locations and fulfilled many wishes. In two weeks he and his parents will be visiting a volcano in Hawaii.

"The question is 'What have I not done?,'" Donovan said.

In May 2007, the Hudson Valley Chapter of the Make-A-Wish Foundation fulfilled Donovan's wish to be an actor and meet the power rangers. They made a movie of him starring as Silver Ranger and showed the video at the Peekskill Paramount Theatre for Arts. To see more about his wish click here.

His mother and father also have a wish.

"We wish to cure FA," Debra Simpson said.

The moto of the Lions Club is "We serve" and over the last 10 years they have served over 200 people and organizations, Lions Club member Gerald Knapp said.

The Lions Club also supports the Midnight Run for Homeless, concert series, food pantries, veterans clothing donations, Halloween parades, Easter basket hunt, Guiding Eyes for the Blind, and other local families and individuals in need.

To make donations to FARA go to http://curefa.org/donate.html


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