I’ve been lucky for the past 12-years to work with the phenomenal kids and adults that have familial dysautonomia (FD). FD has been a focus of my research since I came to the US and joined NYU. The Familial Dysautonomia Foundation has supported my research from my early years as a post-doc at NYU. I’ve seen first-hand how the money they raise goes back into funding programs that save the lives of these kids on a daily basis. I am proud to be a part of that incredible team of doctors, nurse practitioners, and research staff; now it’s my turn to give back (with your sponsorship support! XOXO).
Although rare, FD is a genetic disease that affects people of European Jewish heritage, whether they know it or not. Children are born without the ability to sense their body and grow up in a world with unpredictable illnesses, eventually going blind and losing the ability to walk. Despite this, they remain optimistic, strong, and full of courage. This is the reason I come to work.
On March 15, 2020 I will run my first half marathon. I’m honored to represent the Familial Dysautonomia Foundation and all it does for helping change the lives of people with FD. Donations go right back into supporting the medical care of these kids/adults and helping research progress towards a cure.
Familial Dysautonomia (FD) is a rare genetic disorder that affects the autonomic and sensory nervous systems. Symptoms include: insensitivity to pain, absence of tears, unstable blood pressure and body temperature, respiratory, digestive and vision problems. Though FD affects people across the world it occurs almost exclusively in people with Ashkenazi Jewish heritage. FD is inherited in an autosomal recessive manner when both, otherwise healthy parents, pass on their copy of a mutated IKAP gene to their unborn child. For more information visit www.famdys.org.