Earlier this year, Marta Rubin Kiesling began her role as executive director of the ALS Association’s Greater Philadelphia Chapter, headquartered in Ambler. Coming from a background in the arts and law, Kiesling brings a different perspective to the organization, which celebrated its 40th anniversary this year. She founded and served as the executive director of Steel River Playhouse in Pottstown and received her juris doctor degree from Georgetown University. The Pipersville resident hopes to aid the estimated 30,000 Americans affected by the disease.
MLT: What made you want to work with the ALS Association?
MRK: The disease is so devastating, and the impact is felt not only on the individual but also caregivers and the families. Patients live two to five years after diagnosis. It’s a very dire diagnosis, and it’s difficult to manage because you essentially lose ability to physically move. It’s believed there’s a connection between ALS and other neurological diseases. All of this research supporting ALS is critical in curing neurological disease in general.
MLT: What’s something people don’t know about ALS?
MRK: A lot of people don’t know what it is. I do think there is increasing awareness, but there’s a tremendous amount to do further than that. I feel, from anecdotal evidence, there’s a fair amount of misdiagnosis. Sometimes, symptoms will mirror a back problem or suggest something other than a neurological issue. Someone can undergo multiple procedures, and, unfortunately, they’ve lost that time and quality of life healing from surgery, instead of understanding the disease process they’re really dealing with.
MLT: What was the reaction when the FDA approved Radicava, the first drug for ALS in 22 years?
MRK: We try to be cautiously optimistic because you don’t want to assume this is the end-all, be-all. It’s a process of great education for our families and patients, so they know what this drug is and can work with their physicians to assess whether it’s the right choice for them. It’s certainly an amazing steppingstone.
MLT: What’s been the most rewarding part of your new role at the ALS Association?
MRK: It’s getting to know the patients and the families and caregivers. Patients are out there doing what they can to advocate. There’s a lot of research with tissue banks and genetics to help future generations unlock the mystery of what causes ALS. [Patients] want to participate in these research programs, knowing it will have no impact on their health. It’s wonderful and selfless.