I write this on along a car ride to an out of town wedding midday after my first double digit run. I reached 10 miles this morning. It was a beautiful morning in NC/SC. I say this because we…

I have a lot of love and passion for the rare disease community every day,  but especially on days like today, since we went to my daughter’s genetics and metabolism clinic st UNC.  Annabelle is 19 months old exactly today…