Yes, I know, last year I claimed that my crazy idea to run the Boston Marathon was a one-and-done bucket list thing. If it weren't for the Running for Rare Diseases Team, there's no way I would've voluntarily run 26.2 miles, or the hundreds of training miles leading up to Marathon Monday. Or that I'd sign up to do it all again...
If you've attended any of our events or read our blog, you know that this is about much more than running though. It's about the ever-growing family we've created over the years. The runners who commit their time and energy to acheiving our goals. The patient partners and their families who share their emotional and heartwrenching, yet courageous and inspirational stories. And the rare disease community members who support us along the way.
According to the National Organization for Rare Disorders (NORD), any disease affecting fewer than 200,000 Americans is considered rare. There are nearly 7,000 such diseases affecting nearly 30 million Americans. Given their rarity, there's often little education, research, funding and support around these diseases.
The funds raised by our team will specifically support patients with undiagnosed medical conditions, that are still searching for answers and struggling to determine what disease they even have. Funds will benefit patients who have applied to the National Institutes of Health (NIH) Undiagnosed Diseases Program, but cannot afford the basic medical tests needed to make them eligible to participate in the program.
This year, I'm running on behalf of my patient partner Gaby! She's a sophomore at Rutgers University studying Food Science and was diagnosed (after many misdiagnoses) with Autoimmune Polyglandular Syndrome Type 1, or APS Type 1, when she was 11. You can read more about Gaby's story here.
So, that's a long winded way of saying I’m honored to once again join the Running for Rare Diseases Team to run the 2015 Boston Marathon! I would greatly appreciate it if you would help me raise $3,500 for this special cause. No donation is too small. On behalf of my team and the rare disease community, thank you in advance for your support!
PS. You can join our Running for Rare Diseases community by subscribing to our blog, liking us on Facebook, following us on Twitter, and watching/sharing our Boston Marathon and Rare Disease Day Relay videos.