“I have to say, Friedreich’s ataxia (FA) is kicking my butt.” That single line brought everyone back to the reality of why they were gathered together on Saturday night in the Sunnyvale Community Center Ballroom for the Friedreich’s ataxia In The Heart (FA-ITH) fundraiser. The fun “in a fundraiser” was at the forefront as guests wined and dined and enjoyed the evening. But the main reason everyone was gathered was to help raise money to fight a dreadful disease that is having terrible consequences on a close friend.
The close friend is Matt Rupel. The last time Rupel, a 25-year old from Santa Clara, was in the spotlight was at the last FA-ITH fundraiser held four years ago. Diagnosed with Friedreich’s ataxia at age 12, Rupel has been confined to a wheel chair since his 21st birthday. During the 2011 fundraiser, Rupel told the audience, “I had faith the wheelchair would never come, or if it did, it would only be for short periods of time.” Now confined to a wheelchair full-time, Rupel’s gregarious and friendly, genuinely glad-to-see-you personality helped people ignore the profound effects of FA. The wheelchair was a battle Matt lost, and he’s had to make additional concessions to a disease that has no known cure. Recently Matt had a cardioverter defibrillator surgically implanted to treat life-threatening abnormal heartbeats. Even with all the challenges facing him, Rupel still managed to get a chuckle from the crowd at the conclusion of his speech that he “…was surprised he hadn’t cried.” What he might not have realized is that while he didn’t, nearly everyone else in attendance did. The strength and courage Rupel displays is admirable even though the disease is taking its toll on him now in more visible ways than ever before.
Although there’s still no known cure, the good news is that the amount of research money devoted to fighting FA has grown considerably. According to Rupel, “The Friedreich’s Ataxia Research Alliance (FARA) has raised millions of dollars for grants to support researchers working to hard on a cure.”
Although exact numbers for how much was raised weren’t available at press time, the event was completely sold out. As with past fundraisers, it wouldn’t be a success without the generous help of the community. Campbell Outback Steakhouse again provided dinner, the band, Buena Vista Jazz Band the music, the Casino games the entertainment, the silent auction items, which helped raise even more money. As a testament to the type of person Matt is, his friends – many of who have known Matt since Elementary School – continued their tradition of serving as the wait staff.
Friedreich’s Ataxia is a rare, life-threatening disease that causes progressive damage to the nerves and muscles. That means it takes great kids and young adults and, for lack of a better term, hurts them. They’re still the same great people, however, but the disease causes them to slur their words, be unable to walk a straight line, and causes severe curvature of the spine and severe heart problems that will eventually kill them at a young age.
For more information on the fundraiser, or to make a donation, please visit www.FA-ITH.org. All proceeds will benefit Friedreich’s Ataxia Research Alliance and are tax-deductible. For more information on FARA, please visit their www.curefa.org.