I can hardly believe it myself, but I, Amy Lee Tull Atwood, one of the LEAST athletic people ever, am running the 2015 Boston Marathon as a member of the Running for Rare Diseases Marathon Team.
Why am I doing this, you may wonder? If you have attended any of our Running for Rare Diseases Team events or read our blog, you know this isn’t really about running. Yes, I know I’m going to have to run (gulp) 26.2 miles on Marathon Monday and do the hundreds of miles of training in the next 100-plus days, but that’s just a formality. This is about people. Inspiring, strong, caring people. The people in the Running for Rare Diseases community. The rare disease patient partners and their families who live with challenges much more daunting, scary and personal than any sporting event, and who do so with the most positive, hopeful attitudes every day. And all the past team members – especially those who, like me, aren’t fast or born runners – who make this more like a family than a work team.
I want to continue throwing fundraisers for our NORD/Genzyme NIH Undiagnosed Diseases Program Fund and help those people out there who have been struggling for years without knowing what disease they have, and don’t even have enough money to have the initial testing done to get them into the program. I want to help them on that first step to finding an answer. And I want to get to know my own patient partner, Jen, her family and all about Hypoparathyroidism. I want to follow the instructions on connecting that Shauna, a 10-year-old patient partner (in front of me with the hat on in the photo), gave us at our kick-off meeting: exchange lists of 10 things about you with your patient partner; make funny faces together; and get on the same level. Without question, I know this will be the highlight for me. As soon as I am matched with a patient partner, I will update this page with his or her story, too.
Another reason I feel like I have to do this: because now I can. I think of how sick I was in 2012, when I couldn’t run a 5k. And I think of others going through cancer treatments and surgeries like I did: I want to show them that they, too, can get through it and be strong again. And I want to do this for those who weren’t as lucky as me…
So I won't ask you to run 26.2 miles with or for me, but I would so appreciate it if you would help me raise $3,500 for the Genzyme/NORD NIH Undiagnosed Diseases Program (UDP) Fund. No donation is too small. Every cent counts.
You can also support us by putting a song on my marathon playlist: Just donate $5 per song, and put the song titles and artists in the comments section. I will add them to my marathon playlist and think of you when they come on while I'm running the marathon! Thank you! (Can't wait to hear your song choices!)
And I would love to see you along the marathon route on April 20 – I will be one of the very last runners so you shouldn’t have a problem seeing me…
Thank you, thank you, thank you...
p.s. Join our Running for Rare Diseases community (if you haven’t already) 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.