A Rare Evening
November 29, 2016
BENEFITING: National Organization for Rare Disorders, Inc.
EVENT DATE: Nov 06, 2016
I'm running in the upcoming New York City Marathon as part of the Running for Rare Team. I was diagnosed with a rare genetic disease called Gaucher (type 1) at the age of three. Despite the challenges of living with a chronic condition, I know that having the correct diagnoses has given me a shot at a healthy life, with access to specialized care and life changing treatment.
Many rare disease patients struggle for years to get an accurate diagnosis and this is why I'm running in support of NORD’s Undiagnosed Diseases Network (UDN) Patient Assistance Program. This program provides financial assistance to families who have exhausted all other alternatives for seeking a diagnosis. The UDN is coordinated out of the Department of Biomedical Informatics at Harvard Medical School and involves leading medical facilities across the United States but the impact of this important research is global and deserving of our support.
On November 6th, I'll be running for my community partner Jen who also lives with a rare disease (hypoparathyroidism). I'm running for Gaucher disease (type 1, 2 and 3), for hypoparathyroidism, and for all those still seeking the correct diagnoses. Please support my run. #weruntogether