Alice Gunderson, along with her late husband, Ed, in the late ‘90’s founded the Myotonic Dystrophy Awareness and Assistance Support Group in the Los Angeles area. Together they have done incredible work to help families with myotonic dystrophy cope with their progressive, multi-systemic disease by organizing monthly, pot-luck, support group meetings with relevant speakers; organizing an annual conference and fundraising evening, an annual golf tournament; a physician education evening offering Continuing Education Units (CEU’s), publishing a newsletter several times a year, hosting a chat room on the MDA web site, and more. Ed was an optician until classical adult onset myotonic dystrophy progressed to a point where he could no longer work and eventually took his life. Alice worked as a personnel agent for middle managers in the fashion industry and later at USC. Sadly, she passed away from pancreatic cancer in June 2024.
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