My cousin Josh and I were born just 10 days apart from one another. Josh is one of the most loving guys around. He's funny, smart, caring and loved so much by his family. He enjoys rocking out to the band Kiss, jamming on one of his many guitars, watching the Disney Channel, traveling with Kids of Courage, and spending time with his cousins. Josh was diagnosed with Familial Dysautonomia (FD) at birth.
Having a family member with FD has always been the normal for me. However, there are so many people who are unaware of how FD affects the lives of all of the individuals who love and care for Josh and other members of the FD community.
In 2016, I ran Ironman Maryland and raised $6800 for the Familial Dysautonomia Foundation. I'll be returning to Ironman Maryland in September of 2020 and as part of the long journey to the finish line, I will be racing the NYC United Airlines Half Marathon on March 15, 2020 and running for Josh and all of the people and families who are affected by FD. My fundraising goal for this race is to surpass the amount I raised back in 2016 - so $7000!
Any amount of money donated would be an incredible gift, as funds raised will go to supporting families with members diagnosed with FD, as well as funding new research initiatives to help find 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.