I first learned of familial dysautonomia (FD) when my father-in-law became involved with the Familial Dysautonomia Foundation’s Scientific Advisory Board. Through him, I learned of the incredible resilience these patients exhibit – despite their debilitating genetic disorder. FD patients are more than their disease, and they prove that every day as they live through respiratory issues, unstable blood pressure, vision problems and more.
These inspiring patients, and the chance to run with my wife, are the reasons why I will be participating in the United Airlines NYC Half Marathon on March 15, 2020. As I train to run 13.1 miles for those who can’t, I need your help to reach my goal to fund critical medical care and valuable scientific research.
You can make a lasting impact for those living with FD.
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.