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…

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…

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,…

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…

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…

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…

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…

“Un Año Nuevo, Una Vida Nueva,” said one of the doctors years later in English to me. Spring 2008-From time to time, my daughter, at almost 4 years old, would try on my wigs and just laugh innocently as she danced…