Hayden & Tanner presenting to their class mates on Rare Disease Day. Both recognized by the TGen Foundation for their efforts to raise awareness. Way to go Hayden & Tanner!
Rare Disease Day Relay 2014
Back on February 29th, 2012, I was in Allston for a meeting and brought along my camera along to try to snap a few shots of the employees running the final leg of the inaugural Rare Disease Day Relay from…
Posted in Running Stories
Rare Disease Day Reflections
As Rare Disease Day is coming to a close, I wanted to a share a great audio clip that my patient  partner Emma recorded for rare disease day. https://soundcloud.com/caseyblumen/dear-mom-and-dad-rare-disease-day Today, I participated in the Rare Disease Day Relay (#GenzymeRelay) here…
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Why Rare Disease Day Matters
Last holiday season, I organized a gift-wrapping fundraiser for the National Organization for Rare Disorders (NORD) at a bookstore. One of my “customers” jokingly said, “Rare diseases? Right, because you wouldn’t want to raise funds for any of those common…
Hope for HH
I am humbled to run the Boston Marathon in Grace Katherine Webster’s memory(12-24-03 to 12-11-11). My goal is to increase awareness of Rare Genetic Disorders and to raise funds to support early diagnosis initiatives by the National Organization for Rare…
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Sisters
My best friend is my sister. Growing up, my parents worked different shifts so that someone could always be home with us. Most nights, while my mom was at work, my dad would be asleep on the couch. I essentially…
Cupcakes, Snowflakes and Heartbreak
February is a busy month for the Running For Rare Diseases team. Our official “team matchmaker” Phil has been working hard to find the perfect pairing of runners with their patient partners. All runners have been matched and our team roster is now…
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Those Silent Tears-2
2006-I promised myself I would try to keep a journal of some of the things that transpired as the disease process evolved, but there always seemed to be something that got in the way. One of my college professors had…
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Those Silent Tears
The holiday season was upon us. It is always such a busy time for everyone, and things just sometimes go unnoticed. Kids were busy cramming for tests to be taken before the holiday break, parents and siblings were bustling about…
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Meet Melissa Higgins – An incredible human being who faces up to the challenges of Niemann-Pick Type B disease everyday
I will be taking on the challenge to run the Boston Marathon on 04.21.2014. This will be my third marathon if I make it to the start line! My goal is to increase awareness of Rare Genetic Disorders and to…
Posted in Patient Stories, Uncategorized
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