When Theresa Stephan Hains’ husband, Jack, started having increasing difficulty swallowing, the couple knew something was very wrong. After months of doctor visits in 2009, they received devastating news— Jack had amyotrophic lateral sclerosis (ALS), or “Lou Gehrig's Disease,” a progressive neurodegenerative disease that attacks certain cells in the brain and spinal cord needed to keep muscles moving.
There is no cure for ALS; most sufferers live two to five years after diagnosis. Jack passed away after only 15 months. He was 58 years old.
“The worst part is Jack knew what was happening as he lost the ability to speak, walk, and swallow,” said Stephan Hains, a physician who serves as director of Buffalo State’s Weigel Health Center. “His intellect stayed intact.”
She described Jack, a U.S. Navy veteran and Buffalo attorney, as an empathetic man who took many pro bono legal cases and served on the board of directors of Buffalo’s Harvest House. He also was involved in the lives of the couple’s three children, now ages 22, 24, and 25, and he liked to travel.
Jack’s sister, Jean Grant, who directed the student health center at SUNY Oswego, also suffered from ALS and died in August 2013. Hains is passionate about supporting funding for ALS research as she wants to prevent other families from experiencing the same devastation.
Since the ALS-inspired ice bucket challenge started sweeping social media this summer, awareness of the disease has grown immensely, and the ALS Association has received $100 million in donations compared to $2.7 million during the same time period last year. The challenge also has funneled $3 million to the lesser-known ALS Therapy Development Institute, which Hains says funds the bulk of ALS research.
In honor of Jack Hains and the thousands of others affected by ALS, Buffalo State’s University Police Department officers took part in an ice bucket challenge on August 28 in front of students gathered in the Student Union Plaza. UPD Police Chief Pete Carey challenged Dean of Students Charles Kenyon, and Buffalo State Director of Athletics and Football Head Coach Jerry Boyes, to be next in line for a public dumping of ice.
They have accepted the challenge, which is scheduled for Thursday, September 4, at 12:45 p.m. in the Plaza. Staff members from the Student Affairs Office and other campus offices and student leaders will participate. Buckets will be set up for donations to ALS TDI.
According to Terri Handler, development director with the Cambridge, Massachusetts-based ALS TDI, the nonprofit organization invests more than 86 cents of every dollar directly into its research.
“ALS TDI was built by and for ALS patients in 1999,” Handler said. “We are the largest dedicated ALS research lab in the world and have raised over $100 million for drug development to date.”
It’s estimated that as many as 30,000 Americans have ALS at any given time.
“ALS is called the ‘nice guy’ disease because it’s a horrible disease that happens to really nice people,” Stephan Hains said. “My husband was one of them.”
Before, his diagnosis, Jack had visited 47 of the 50 states. In the year following year, the couple traveled to the three remaining states and to New Zealand. Even while confined to a wheelchair, Jack also served as the best man at his best friend’s wedding.
“He lived life to the fullest,” said Stephan Hains, who took a year off from work in order to care for her husband as his health declined. “It was a gift that I got spend that year with him.”
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