Showing posts from March, 2016

Running The Boston Marathon — Together

Running for Rare pairs  up runners and rare disease community members to raise rare disease awareness and raise funds for the  the   National Organization for Rare Disorders, Inc. (NORD)   and   National Institutes of Health (NIH)   Undiagnosed Diseases Program.  As a fibromuscular dysplasia patient, I have been fortunate to be a patient partner for two years now — first with Jessi Colund in 2015 and now with Martha Staples. I am humbled to be a source of inspiration for these women who have put in mile after mile and will be at the starting line for the 120th Boston Marathon bright and early on April 18, 2016.   I am not a runner. I never have been, and I don't anticipate I ever will be. A physiatrist friend of mine is recommending I start a program of "vigorous walking" for five minutes a day for four to seven days and then doubling that to 10 minutes a day. He wants my heart rate up. I told him that unloading my groceries gets my heart rate up. It's a matter