When Donna Lange's father was diagnosed at age 59 with amyotrophic lateral sclerosis, she and the rest of the family didn't know where to get help.
She had heard of Lou Gehrig's disease, she says, "but I didn't know what it was." Suddenly she and her sisters and mother were scrolling the Internet, haggling with health-insurance agents and seeking answers from the ALS Association in Calabasas Hills, Calif., in addition to caring for the man. She could find nowhere locally to turn.
Lange and her five sisters took turns, making sure their father had care around the clock. Richard Mott died six months after diagnosis, on Sept. 11, 2000.
Today Lange is starting a local chapter of the ALS Association, a national, not-for-profit, voluntary health organization dedicated solely to finding a cure for and improving life for people with ALS. She hosts a "coming out" meeting from 7 to 9 p.m. March 25 in the North Medical Center main lobby on Taft Road in North Syracuse. Similar meetings are set for March 26 in Rochester and March 27 in Buffalo.
As her group gets off the ground, the local office of the Muscular Dystrophy Association is starting new support groups for people affected by ALS. They're free.
The Syracuse-area meeting is the second Tuesday of the month. The next one is 1 to 3 p.m. March 11 at the Rosamond Hospice on Seventh North Street in Liverpool.
The Utica meeting is the third Thursday of the month. The next one is 5 to 7 p.m. March 20 at the Faxton Hospital Auditorium on Sunset Avenue in Utica.
ALS is a progressive, fatal neurodegenerative disease that claims about 5,600 Americans each year. It's known as Lou Gehrig's disease after the famous Yankee baseball player it claimed in 1941, when Gehrig was 38. Gehrig was born 100 years ago this June.
The ALS Association says 15 new cases are diagnosed every day. Mental faculties are not affected, but the person loses voluntary muscle control until he or she is completely paralyzed. Survival time from diagnosis is usually no more than five years, and there are no known cures.
Dr. Jeremy Shefner is director of the Muscular Dystrophy Association/ALS Research and Treatment Center at SUNY Upstate Medical University. He has seen an increasing number of people with ALS in the six years since opening the center because he and colleagues have an increasing number of potentially effective treatments.
Three studies under way now are based on success that's been demonstrated in animals, he says. They include Celebrex, an arthritis medicine; dietary supplements that protect parts of nerve cells; and the antibiotic minocycline, which seems to inhibit the enzymes that contribute to cell death.
For more information, call him at 315-464-4243.
