Category Archives: Uncategorized

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

Posted in Uncategorized | Leave a comment

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

Posted in Uncategorized | 1 Comment

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

Posted in Uncategorized | 6 Comments

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

Posted in Uncategorized | 3 Comments

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

Posted in Uncategorized | 2 Comments

Measuring Life with Coffee Spoons

I used to be one of those people for whom being on time was at least 5 minutes early. But these days, I’m perpetually running late – trying to squeeze in 1 or 2 more things before I leave the … Continue reading

Posted in Uncategorized | 1 Comment

Sam Vs. VWM

Andrew Hegedus is Sam’s running partner. Here is our story. Sam is happy 4-year old, full of life, quick to laugh and smile. He has a great sense of humor. He is loving, affectionate, grateful and appreciates the little things … Continue reading

Posted in Patient Stories, Uncategorized | Tagged , , , | 1 Comment

Blizzard 2015 Rare Style

Monday we spent the day running around getting ready for the 24 inches of snow they called for in Southern New Hampshire (we ended up with 33 inches). Besides the food and water, generator for heat, we have another necessity … Continue reading

Posted in Uncategorized | 2 Comments

My First Heartbreak… Hill

This weekend was the first time this year we met as a team to complete our first weekend long run as part of our training program. It was also the first time in my life that I climbed the Newton … Continue reading

Posted in Uncategorized | 5 Comments


So, I took the Holidays off from running.  <Eek!>  That’s a whole 2 months off from running (well, a part from a few fun 5Ks…which they don’t really count because is it a training run if you are in costume … Continue reading

Posted in Uncategorized | Tagged , , , , , , | 4 Comments