Brian Berman is president and chief executive officer of the National Gaucher Foundation (NGF). He was also the reason that his parents, Mr. Dennis Berman and Dr. Robin Ely, formed the NGF more than 30 years ago.
Early Years and Gaucher Disease Treatment Advances
Diagnosed at the age of 4 after suffering critical and worsening symptoms, Mr. Berman’s initial prognosis was grim. His parents refused to watch their son die without a fight. They found Dr. Roscoe Brady, who was then leading groundbreaking research on Gaucher disease treatment. Mr. Berman, an ideal clinical trial candidate, became the first person in the world to successfully receive enzyme replacement therapy for Gaucher disease.
Mr. Berman’s youth was unusual, with strict medical treatment and regaining health dominating his early childhood. He began advocating for patients at a young age to support the NGF’s efforts to make treatment available to the Gaucher community. He has spoken twice before Congress, appeared on nationally televised news shows and was featured in several medical documentaries.
Continued Advocacy for Patients with Gaucher Disease
Mr. Berman graduated from the University of Maryland summa cum laude and spoke at his business school’s graduation. In that speech, he spoke before an audience of 8,000 people on the importance of appreciating life’s blessings and giving back.
Mr. Berman became president of the NGF in 2012. He is a passionate advocate for the Gaucher community, drawing upon his deep personal connection with the disease. Mr. Berman spearheads projects such as the Optimal Health Initiative aimed at maximizing the duration and quality of life for people with Gaucher disease.