Adult Polyglucosan Body Disease Research Foundation’s incoming co-president Jeff Levenson recently sat down — by phone — for an interview with Daniel Levine who is working on a “Rare Leaders” series for Global Genes.

Global Genes is a non-profit 501(c)(3) corporation advocating for rare disease globally.  The APBD Research Foundation has been a RARE Foundation Alliance partner since 2015.

When asked about how he got involved in rare disease, Jeff shared, “My journey with the Adult Polyglucosan Body Disease Research Foundation started 15 years ago, when I met Edwin Kolodny (then chief of the Department of Neurology at New York University Medical Center) and the Weiss brothers—Gregory, Emil, and Michael—who were diagnosed with APBD. But, in fact, my family has been living with the ravages of APBD for more than 40 years. For the first 20 years, the disease did not have a name. It was mistakenly thought to be MS. We watched my father and his brother slowly deteriorate while undergoing treatments that did not work. There was nothing that we could do other than make their lives as meaningful and comfortable as possible.”

Read the full interview here…