April 17, 2016
BENEFITING: National Organization for Rare Disorders, Inc.
EVENT: 2016 Boston Marathon
I am honored to be part of the Running for Rare Disorders team this year. I will be running my first marathon in Boston (go BIG or go home) on April 18 to raise awareness and money for an excellent cause. To help me with this task, I have recruited 2 amazing partners.
Pictured with me on the main page is my first patient partner, Patrick and his companion dog, Bindy. This picture was taken after we all had breakfast at Syrup in Denver where Patrick told me about his struggles with Cyclic Vomiting Syndrome, a disease he has been living with for many years. With the help of Bindy and a lot of courage, Patrick and his family are managing this frustrating disease admirably.
My other patient partner is my son, Garrett. Garrett has Niemann Pick Disease/ASMD. Garrett continues to thrive despite being the underdog against an unforgiving opponent.
Both of my partners have shown incredible strength in the face of uncurable diseases. I am proud to be running the Boston Marathon on the Running for Rare Disorders team in their names. Please help the 3 of us raise funds for NORD to support the NORD NIH Undiagnosed Diseases Program (UDP). As many rare disease patients must endure a long odyssey before finally receiving an accurate diagnosis, the entire Running for Rare Diseases team is passionate about enabling early diagnosis for those living with mysterious, rare conditions.
Every donation counts! Thank you!!