A lot of us in the Rare Disease world refer to the ups and downs of the diagnosis (or hunt for a diagnosis) as being a marathon. This weekend, I discovered that our life is far more than just a…

The 2016 Boston Marathon was pure misery: My feet hurt, my knees hurt, and with the gels I was taking during the run, my reflux was acting up, so my chest hurt and I felt nauseated for almost the entire…

Those are the words I managed to mumble to Dan Wilkens, my Running for Rare partner, around mile 12.5 last year; I couldn’t believe I was about to complete my first Half Marathon. A few minutes later, Dan grabbed my…

I am so honored and excited to be running in the 2016 Boston Marathon to raise money for NORD. My patient partner this year is Sarah who is diagnosed with fibromuscular dysplasia. As we’ve gotten to know each other, I’ve been inspired…

Last Monday, I participated in the Sanofi Genzyme Running for Rare Disease Day Relay. I ran from my Westborough, MA office building to the Framingham site. The run was 6.9 miles; the longest run of my training for the May…

17 Miles. That is what I ran today. The longest and by far the most difficult run I have had to date. The first 15 miles went well despite the single digit temperatures and the wind chill that brought the…

This week I missed 5 days of training in a row due a to combination of factors – work, being tired, Run4Rare fundraising, kids waking up in the night, and just not feeling like getting up early. I don’t like…

It has been just over 5 years since Madi was diagnosed with CCHS. Initially we were overwhelmed, and just could not digest our future, but most especially her future. How will she tell friends? How will she meet “someone” ?…