It has claimed the life of actor David Niven, former St. Louis symphony music conductor Hans Vonk, and the New York Yankees pitcher who gave it a nickname: Lou Gehrig. Every 90 minutes, someone is diagnosed with amyotrophic lateral sclerosis, a fatal neurodegenerative disease that eventually leaves patients completely paralyzed.
The ALS Association, St. Louis Regional Chapter, is dedicated to educating the community, supporting research and improving the quality of life for those affected with the disease. Maureen Barber-Hill, the chapter’s president and CEO, became involved as a volunteer in 1990, after her father, Wayne Barber Sr., was diagnosed with ALS. “Before my dad became ill, I had never heard of this disease,” she says. “I suspect he probably had it for a year or so before he was diagnosed, because I noticed he was becoming weaker.” Barber-Hill says diagnosing ALS can be difficult. “There’s no test to determine if someone is affected, so it’s a process of elimination. The ALS Association was so helpful, educating us about what we should know and what to expect.” Wayne Barber succumbed to ALS in 1992, and his family founded a memorial golf tournament to benefit the association. Now in its 26th year, the tournament will take place Aug. 26 in Forest Park.
The organization’s signature event is the annual Walk to Defeat ALS on June 25, also in Forest Park. Berger-Hill says the event could not happen without the tireless help of volunteers. “There is a massive amount of work that goes into orchestrating a one-day event for 3,000 to 4,000 people, and there’s always at least 100 volunteers on the walk day itself.” Volunteers often discover the organization after their own experience with ALS, she says. “They just naturally navigate to us, saying, I was affected by this disease and I want help others. We find out what their interests are and they become active on our committees. Most of the volunteers return year after year.”
In addition to raising funds, the ALS walks raise awareness, Berber-Hill says. “It’s so important for us to develop partnership with other organizations and businesses, because 42 percent of our revenues come from the community. And when thousands of people come out to support our mission, that makes a statement. It reminds everyone that we must continue to raise money to find a treatment and a cure. Every dollar that we raise stays in our community to provide services from our chapter at no cost to the patient.”
ALS Association services include home visits, transportation assistance, educational materials, loan of assistive devices and end-of-life counseling. “That’s what we’re all about,” explains Berber-Hill. “Providing support, not just during the patient’s life, but for the families after their loved one dies.” ALS is a very individualized disease, she adds, and every patient progresses at their own rate. “We pride ourselves in our holistic approach. We’re there to reduce the stress on the caregiver, help with the financial strain, and provide guidance and education. We treat the whole family.” LN