My birthday is coming up in two weeks. (Thanks Mom for giving me an easy-for-others-to-recall “Cinco de Mayo” birthday! Also, I’m sorry for hanging around for so long when I was due in mid-April.) I’m turning 29, which is not a milestone birthday by any stretch of the imagination, but it’s the most special birthday to me so far because I’m alive. And that means an entirely different, more wonderful thing than it has in years past.
I kindly decline presents or cards, but if you feel inclined and are able, I’d truly appreciate donations to my fundraiser for the Desmoid Tumor Research Foundation.
This post is hard for me. I don’t like asking for things and just writing about this makes me feel vulnerable and a little of self-serving. But the DTRF is the best chance I’ve got for effective treatment and long-term care, since they’re the only organization in the world dedicated to the research of my diagnosis.
The DTRF is a small organization and fundraising is key. Here’s why every dollar counts:
- There is no FDA recommended treatment for Desmoids.
- My doctors don’t know how Nexavar, my chemo medication, works.
- Currently, the most “cutting edge” research is that Nexavar is more effective than a placebo.
- I believe that with more funding, we can do better than that… and truthfully, I need us to do better than that.
There is no such thing as “only $5.“ Trust me, that’s $5 closer to me keeping several bones and muscles, figuring out a way I can get treated, and even making it possible for me to do a cartwheel again or not get stuck in a hoodie as I try to take it off.
I’ve created a fundraising page where you can make a donation to the DTRF and their annual 5k, Running for Answers. There are so many worthwhile charities and causes out there, but this one in particular has been my lifeline since February. I would love to make sure all patients with this rare diagnosis are served in the same way.
Most importantly: thank you, thank you, thank you for all of your constant kindness and support. Your comments, text messages, and phone calls have proven to me, time and time again, that it’s possible to live an extraordinary life even when your life has been turned upside down by a diagnosis. I am unfathomably lucky.
Click here to donate – and l will do a dance in your honor! (Honest to goodness. Footage available upon request.)