Jamaica Plain Family Runs Together to Fight Rare Genetic Disease

At 70, Michael Sack picked up running again for the first time in two decades, and for a very good reason -- his granddaughter Havi Goldstein. Last December, 2019, Havi, now 2 years old, was diagnosed with Infantile Tay-Sachs, a rare fatal genetic disorder that affects approximately 16 children per year in the United States. In the past eight months, Matthew and Myra, Havi’s parents, and their extended family have grappled with the profound grief and anger that come with the diagnosis. This summer, Michael and his wife Sandi, along with Havi’s aunts and uncles, Jacob, Erin, Leah and Mike, arrived in Jamaica Plain to support the family. Sack starts his morning runs before the sun comes up from a rental home in Jamaica Plain with the purpose of raising money for the non-profit Courageous Parents Network (CPN), and will be doing so by participating in this year's virtual Falmouth Road Race, a 7-mile race from Woods Hole to Falmouth Heights.