A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Wednesday, September 4, 2013

NNPDF Conference - Baltimore

The first four days of August were spent in Baltimore at the annual Niemann-Pick Disease Family and Medical Conference.

This year the International Niemann Pick Disease Alliance also joined us at the conference.  It was a unique chance to meet international families and realize that we are all bound together by the same issues.

We had the wonderful experience of welcoming Greg Crawford, Dean, College of Science, at Notre Dame University.  Greg was completing a cross-country bike ride in support of Niemann Pick reseach.  You can read about his ride and his fundraising efforts here.

I shared the photo of the yearly memorial service and the names of those lost since last conference.

I was also able to meet Kristen Lopez.  She lost her son Gavin to NPC just 12 days before we lost Dan.  At the time Kristen had a blog explaining all the changes and issues she was experiencing with Gavin.  We bonded over emails and Facebook, but had never met in person.  Here is a picture of the 3 of us at the Greg Crawford welcoming ceremony.


We also had a chance to meet a family that used to live a few hours from us but recently moved back home to Rhode Island to be closer to better medical care for their son Chase, who just turned 4.


There were so many families that I had only met online and many families that came to the conference for the first time.   Although it is an emotionally difficult time watching the disease progress, it is also an uplifting time meeting with other families and sharing a laugh or two.

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