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…

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” ?…

There could be no better day than today to introduce myself as part of the Running4Rare Boston team. But, before I tell you the importance of this date, I’ll tell you a bit more about myself. My name is Sarah,…