Blog Archives

Season of Change

I walked past my bedroom wall some days ago, a wall that has the poster from 2yrs ago of Jessi (my 1st runner), myself, and sweet Ben whom also had a form of my MPS and whose family I hold

Posted in Patient Stories

Year of Change; 3rd yr Patient Partner (MPS I)

This has been a really difficult post to write though I can’t really say why!? I went back and was reading Anne Burtenshaw (and her husband Ed) entries from the last 2 years and realized I just needed to stop

Posted in Uncategorized

Jessi’s run, Ben’s Dream; our Day – MPS Awareness

I first met the Siedman Family in May 2007, while in MA for a MPS I patient panel at Genzyme. After the MPS I Awareness day events in 2007 I, went and stayed with Jenn and her family for a

Posted in Uncategorized

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