|
"Man, His Music a Match for Lou Gehrig's Disease" by John Nocero Staff Writer, The Sun Courier March 30, 2000 When Kyle Hahn jammed in his band 20 years ago, no one knew he would be struck with amyotrophic lateral sclerosis, more commonly called Lou Gehrig's disease. But Hahn's music has become his greatest weapon in fighting the degenerative disease. From that comes the support of some very close friends. Brecksville resident John Jesser, a vice president with Cleveland and Akron Anthem Blue Cross and Blue Shield, is a former bandmate of Hahn's. The two created a double compact disc of their compilation titled "Kyle Hahn - Friends." "ALS could have hit any of us, but it happened to my longtime friend Kyle," Jesser said. "His courage and commitment to help others with this disease has inspired me to put in the extra hours to make this CD a testimony to his great guitar work, a great friend and worthy cause. There's nothing like having ALS strike closely, when it's put in front of you like this. I realize there is a lot you can do, even though you feel helpless. This is another way the disease is closer to a cure. It gets information to people, helping them live the best life they can." Making the CD helped Hahn remember some of the best moments of his musical career. While other kids grooved to the Beatles, Hahn was in his bedroom bending notes like Eric Clapton and trying to sing like Stevie Wonder. He played in bands like the Vagrants or Wild Hares. When the guitar grabbed his interest, Hahn joined a band called The Stems with a drummer who loved a new band called Kiss. With a big drum kit and even bigger amplifiers, they were heard as far as 5 1/2 miles away. "Things escalated from there." Hahn said. "I was playing with a multitude of different groups and opening for such legends as Molly Hatchet, Foghat and Blackfoot." Hahn ended his career in the mid-1990s as lead guitarist and keyboard player for the modern rock group Crawdaddy. He was losing his ability to play. It was around that time Hahn learned he had Lou Gehrig's Disease. While being treated at the Cleveland Clinic, Hahn came up with the idea of compiling a CD from the mountain of tapes he'd amassed with Jesser. "I had found my life was a bout to come to an end very shortly" Hahn said. "How better to illustrate it than in my lifetime achievement with my friends in music?" Hahn also knew Jesser had number of tracks on cassette or reel-to-reel tape recorded with old groups. The duo also contacted others they played with to see what they had in storage. Over 18 months, they tracked down 17-plus years of music made with more than 25 artists. "He asked if I would help sort out reels of tape," Jesser said. "We had some professionally mixed at a studio in Columbus." The CD, he adds, "is doing as well as we wanted it to do." All proceeds from the CD help those with ALS and their caregivers through education, awareness and advocacy. The organization behind these efforts is ALS March of Faces, a nonprofit group founded by Hahn and of which Jesser serves as a trustee. March of Faces has helped ALS organizations across the country and around the world raise over $1,000,000 through a number of fund-raising events, including rock concert benefits, an advocacy website, national television exposure, and a traveling exhibit that features 170-foot photographic display of people with ALS. When Hahn met Terry Frank, now March of Faces' secretary, he was starting on Myotrophin, and experimental drug. Hahn appeared on "Dateline NBC" to explain his situation and help get marketing approval from the Food and Drug Administration. People were asked to write for encouragement, and photos began coin in. Using her graphic arts background, Frank enlarged each picture and had them printed onto a vinyl banner. "That's how the whole thing started." She said. "This is such a fantastic awareness tool. We have over 700 photos from all over the world who couldn't be there with us" Frank says Hahn is "over the rainbow" about the CD, the making of which was a lifelong dream. But Hahn says the experience was bittersweet. "It was a wonderful trip down memory lane to put this CD together," he said. "It began with the idea I was coming to the end of the road, charting the map of my life's path. What we found out was there is a fork there, and it has inspired me even more to continue." Physically, Hahn feels great and has lots of energy. Although he's not able to use his voice or extremities, he has more tapes and looks forward to putting more recordings together as well as composing new pieces. He composes tunes on his laptop computer with a mouse controlled by head movement, music software programs, an on-screen piano keyboard, and samples of his own previously recorded music. "You just can't take the music away from the man," Frank said. Emotionally, Hahn has taken his illness in stride. "I have the love of some of the most wonderful people in the world." He said. "my family, friends and I have faith. If more people had half of what I do, the world be a better place." "Kyle Hahn - friends" can be ordered by sending a $20 donation to ALS March of Faces, 402 Sal Blvd, Suite B, Trenton, Ohio, 45067-1396; by calling (877) 884-4798; or by logging on to www.march-of-faces.org. |