April 2006 I continued visiting the dermatology office for PUVA treatments about three times a week.  Shortly after treatments began, my scalp began to burn and become extremely sensitive and irritated.  I then had to be prescribed with a topical…

March 31, 2006 This was the first damp, dreary day that was the onset of what would be a series of unfortunate and catastrophic events.  I awoke earlier than usual, as I was assigned to a special project with the…

When I run I typically leave the headphones and music at home as I like to use that time for thinking and reflecting.  With all the training these days for Boston there has been plenty of time to reflect (we…

Hayden & Tanner presenting to their class mates on Rare Disease Day. Both recognized by the TGen Foundation for their efforts to raise awareness. Way to go Hayden & Tanner!  

As Rare Disease Day is coming to a close, I wanted to a share a great audio clip that my patient  partner Emma recorded for rare disease day. https://soundcloud.com/caseyblumen/dear-mom-and-dad-rare-disease-day Today, I participated in the Rare Disease Day Relay (#GenzymeRelay) here…

I am humbled to run the Boston Marathon in Grace Katherine Webster’s memory(12-24-03 to 12-11-11).  My goal is to increase awareness of Rare Genetic Disorders and to raise funds to support early diagnosis initiatives by the National Organization for Rare…

February is a busy month for the Running For Rare Diseases team.  Our official “team matchmaker” Phil has been working hard to find the perfect pairing of runners with their patient partners.  All runners have been matched and our team roster is now…

2006-I promised myself I would try to keep a journal of some of the things that transpired as the disease process evolved, but there always seemed to be something that got in the way.  One of my college professors had…