Did you know that Running for Rare has a Community Partner Committee? Our main objective is to support healthy and safe community partnerships for the Running for Rare team. We develop strategies to grow the community and work to ensure…
Blog Archives
Big City Hope
With the New York City Marathon less than two weeks to go, I wanted to share why the Big Apple is such a magic location on my family’s journey with a rare disease. Earlier this year, I had an opportunity to speak on the…
Posted in Patient Stories, Running Stories
CHI x 2, Wally, Winning The Lottery Again, A 4th Son and The Pinnie
Our recent Providence Running For Rare weekend evoked many emotions, but we think happiness and gratitude top them all. We are so happy to have had the opportunity to be part of this amazing group, and we are grateful for…
Posted in Patient Stories
Amelia’s Providence Experience
My name is Karen. My daughter Amelia participated as a RARE Community Partner as part of the Providence Half Marathon/Marathon weekend. Her running partner is Phil. Amelia has a rare medical diagnosis called Congenital Hyperinsulinism (HI); only 1 in 50,000…
Posted in Patient Stories
A Newbie’s view
As a first time patient partner I was not sure what to expect but after getting to know my running partner Sophie Hu this past few months, it has turned out to be a wonderfully positive experience for me. After 2…
Posted in Patient Stories
It All Came Together…
On April 16, 2016, the Running4Rare team came together for the first time as an independent entity working with the National Organization for Rare Disorders (NORD) and the Undiagnosed Diseases Network (UDN). Â It was a very special evening for all…
Posted in Patient Stories, Running Stories
RUNning for Rare Zebras!
For the past two years I have been partnered with Emma, a member of the Gaucher community for the Running for Rare team. This year I am very excited to be partnered with the Szajnuk family, who represent the undiagnosed…
Posted in Patient Stories
RARE Community Partner Continues Her Fight
Tara is a RARE Community Partner  for the third year with runner, Nick Thurlow, and is representing the Mast Cell disease community. She has been a wonderful member of our team for 3 years and we would like to share her…
Posted in Patient Stories Tagged with: Assembly Education Committee, Mast Cell Disease, NYS Bill A1470B-2015, rare disease, stem cell transplant
Season of Change
I walked past my bedroom wall some days ago, a wall that has the poster from 2yrs ago of Jessi (my 1st runner), myself, and sweet Ben whom also had a form of my MPS and whose family I hold…
Posted in Patient Stories
Will Run for Coffee
By Jen Melanson with Emma Rooney I am very excited to, once again, be part of the Running for Rare Team, this year as a runner. I’m training to take part in the Providence Half Marathon which is less than…
Posted in Patient Stories, Running Stories
Welcome to the Running Archive
Archive of posts from Marathon runners dedicated to making a positive impact on the lives of people with serious disease.
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