The National Tay-Sachs & Allied Diseases Association (NTSAD), the nation’s oldest patient advocacy organization, will honor Robert Coughlin, President and Chief Executive Officer of the Massachusetts Biotechnology Council, at Imagine & Believe, NTSAD’s annual Boston fundraising event to be held Thursday, November 5, 2015 at the Royal Sonesta Hotel, Cambridge MA. Proceeds from the benefit will fund rare disease research and provide support for families affected by Tay-Sachs, Canavan disease and other related rare genetic diseases.
While focused on supporting a robust biotechnology industry in Massachusetts, Bob’s leadership at MassBio has emphasized that pateints must be at the center of all conversations. As a father of a child with a rare genetic disease, he understands the patient’s perspective and recognizes that the industry is moving forward toward finding treatments for rare genetic disorders and orphan diseases.
“Bob’s exemplary dedication to the world of rare diseases is an inspiration to our community of families, clinicians, scientists, biotech companies and other friends and supporters,” said NTSAD Executive Director Susan Kahn.
In a 2014 Boston Business Journal article Bob said, “I think it took me until I was about 40 to figure out that success is not measured by how much you make. It’s about being compensated for doing something that you really love and that you’re passionate about. And I’ve got that.”
In addition to providing research grants and supporting more than 500 affected families and individuals worldwide, NTSAD’s educational programs raise awareness of how to prevent Tay-Sachs, Canavan, Sandhoff, GM-1 and related neurodegenerative diseases caused by an enzyme deficiency. The diseases are fatal in children and progressively debilitating in adults.
“We are honored to recognize Robert Coughlin for his accomplishments but most importantly his passion for supporting and guiding an industry devoted to rare genetic diseases,” said NTSAD President Brian Manning. “Like Bob, NTSAD is committed to supporting and connecting thousands of families and individuals worldwide who have been or are affected by lysosomal storage diseases and leukodystrophies.”