Prosch fights to raise Lou Gehrig's awareness
When Marilyn Prosch, an associate professor of accounting in Arizona State University's School of Global Management and Leadership, learned two years ago that her husband, Scott, was diagnosed with ALS, the shock was huge. Also known as Amyotrophic Lateral Schlerosis, or Lou Gehrig’s Disease, this neuro-degenerative disease affects the nerve cells in the brain and the spinal cord and can turn the strongest athlete into putty – within years.
Scott can’t even grip a golf club today when three years ago, at age 45, he won tournaments in nearby Tempe. He adored scuba diving and sports, but now requires a wheelchair. Scott’s once rich, baritone voice is fading. His hands and arms are weak, making driving a thing of the past and typing at the computer nearly impossible.
The ALS Association, a national non-profit group, tracks 30,000 Americans with ALS, but Gary Wosk, the association’s media relations manager, suspects there are more. Last October the U.S. House of Representatives passed the ALS Registry Act by an overwhelming 411-3 vote. This legislation would establish the first-ever national patient registry of people with ALS, administered by the Centers for Disease Control and Prevention.
The act is now in the Senate and, if passed, will determine “precisely how many people have this disease,” Wosk says. “It is a big step toward finding a cure and gathering support.”
Marilyn and Scott Prosch and their six children all join with Wosk and others in hoping for a cure, but it gets tough when, for now, none exists and the disease is fatal. Socially, few people understand what ALS entails, and the media have done little to bring the insidious ailment to the forefront.
And that’s precisely why two years ago Prosch launched “Scott’s Heroes,” a fund-raising group that organizes public walks and other events to help raise capital for the ALS Association. And while Marilyn’s sharpest focus is on Scott, her efforts to bring the disease onto center stage are working.
Last year, Prosch’s walk team of 150 raised more than $30,000 for the Arizona chapter of the ALS Association, a chapter formed in 1989. The weather was wonderful, says Prosch, with many participants flying in for the event from around the country. The team wore Scott’s Heroes t-shirts and Scott’s current employer hosted a huge luncheon. Thanks to this and other fundraising activities - movie viewing, dinners and more - Scott’s Heroes, under Prosch’s leadership, raised a whopping $100,000 for the ALS Association during the past year and a half.
This year should show more productive fund-raising with an ALS Awareness Day held in mid-March already successfully on the books. The event featured a showing of the movie “Pride of the Yankees” (a biographical pic about the famous slugger whose life was cut short by the disease that would eventually be named after him) and attracted a good turnout, according to Prosch.
In spite of the successful fund-raising and huge support shown by their local community, having a family of six kids and a husband with Lou Gehrig’s Disease is tough. Prosch admits this last year has been extremely “difficult for them all.”
However the Prosch’s determination remains amazing. Recently Scott was given a feeding tube, but refused it because he wants to “taste food as long as he can,” says Marilyn. Doctors are training Scott on the Eyegaze system, an eye-controlled computer communication system produced by LC Technologies, Inc., which helps him type.
Scott and Marilyn even traveled to Europe twice this past year, and the children remain touchingly helpful, putting on their Dad’s shoes and socks and helping him scratch itches he can no longer get to. Says Prosch, “Time is ticking for Scott. But we see new developments with technologies and research and we are holding on.”
Information about the ALS Association is available at www.alsa.org.