Running is easy, blogging is hard….

Writing down your thoughts has to be one of the hardest things to do…. Those that know me even in the slightest bit know that I truly enjoy chatting with people. So, writing something for the Running For Rare blog

Posted in Running Stories, Uncategorized Tagged with: ,

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

26.2 Degrees of Keven Bacon

When I think or rare disorders one thing that pops in my head is Kevin Bacon.  It’s an odd thought, but if you’ve heard of him, then you’ve probably heard of the game “6 degrees of Keven Bacon.”  If you

Posted in Running Stories

What is hard?

I am currently training for the NYC marathon and raising money and awareness for Running for Rare. A few weeks ago I was off to meet some friends for my long run. We meet bright and early ready to run

Posted in Running Stories

Running for Rare First Timer

About two months ago my childhood friend Emily asked me if I’d be interested in running the Hartford Half with Running for Rare. I knew I could do the running part, but was nervous about the partner part. I asked

Posted in Uncategorized

Advocating to win the fight

My name is Noah Victoria I am 19 years old I was diagnosed with Abetalipoproteinemia, which is a rare metabolic disorder. This was my second year participating in Running for Rare Diseases as a patient partner. I must start off

Posted in Uncategorized

#Anything is possible

#Anything is possible This past July, I completed my first Ironman in Whistler Canada at Ironman Canada. It is still unbelievable that I was able to finish the 140.6 miles of swimming, cycling and running through the mountains around Whistler

Posted in Running Stories

Never Thought I’d Become a Marathoner, But Here I Am

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Hey all! First of all, thank you for taking the time to give me a few minutes of your time to discuss my marathon training and my Community Partner, Tara Notrica. My name is Kaitlin Bartlett, I’m 29 years old

Posted in Running Stories, Uncategorized Tagged with: , , , , , , , , ,

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

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