I’m in!!

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I run predominantly in the mornings, generally between 5 and 6am at a length of 6-10 miles each day during the week.  I choose the morning because this is my time; no meetings, no lost family time, and nothing else … Continue reading

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Running like a hamster

This is my first blog post, so please bear with me. I am so excited and proud to be running the Boston Marathon this year for the National Organization for Rare Disorders (NORD). The picture above is my view as … Continue reading

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Run Happy. Run Smart. You’re Awesome.

To all my running teammates in New England – Run happy. Run smart. You’re awesome. Since January 23, the Boston area has received 90.2 inches of snow – that’s more than 7 ½ feet! February 2015 is only halfway done … Continue reading

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You’re so vain, I’ll bet you think this post is about you

Cushing’s is a pretty brutal way of coming face-to-face with your vanity. Cushing’s syndrome is what happens if your body is exposed to excess cortisol. You can get Cushing’s by taking glucocorticoid medications (like Prednisone) for an extended period of … Continue reading

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My Awareness Day at SJP

Hello my name is Matthew Maderia. This is my first year on the Running for Rare Diseases team and I am training for my first half marathon. On Friday February 6, a few friends and I organized our second annual … Continue reading

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LIVING with Hypoparathyroidism

I was not born with a rare disease. I was a healthy, active, “regular” kid. I played hide-and-seek until the streetlights came on with all of the other kids in my neighborhood. I walked to school, played softball and basketball, … Continue reading

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Journey… of Running!

My running experiences began as early as I was in middle school as, intraschool track and field competitions. We were assigned to junior, intermediate and senior bins based on the height and weight. I was more of junior/intermediate category, till … Continue reading

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Getting diagnosed with Cushing’s is a marathon, not a sprint

As a former marathoner myself, I see so many parallels between the marathon and getting diagnosed with a rare disease (Cushing’s in particular). Crossing the finish line of the marathon is such a mix of pain, exhaustion and relief. As … Continue reading

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From Skepticism to One Awe Inspiring Experience…

On January 20, 2014, a young girl, just turned 18 years old, received an email. That email was from NORD (the national organization for rare disorders) and stated that Genzyme was looking for patient partners for the Boston Marathon. The … Continue reading

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Running for Sam

  On friday I had the great fortune to meet my patient partner Sam, and his parents, Allyson and Nick Buck, in their home in Greenwhich, CT. Allyson has already posted a great summary of Sam’s story. Sam is an amazing little … Continue reading

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