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…
RACE COMPLETED
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…
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“I can’t believe this is really happening…â€
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…
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Shauna and her rare disease – Rothmund-Thomson Syndrome
I’d like to start with a heartfelt Thank You to the Running For Rare runners, patient partners, volunteers, NORD, UDN and everyone else who is involved in this community. Our family has made so many friends and bonds in these…
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Being Resilient and Happy
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…
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