Wednesday, July 16, 2014

BBS conference in Iowa

So many exciting things were discussed at the latest BBS conference which was held at the University of Iowa.  Lots of good research and hope on the horizon for BBS families.  Lots of details and pictures over HERE.

One of my favorite parts was the announcement that the BBS National Registry is officially in the works.  Part of that is being funded with the money blog readers helped raise (back HERE).  Thank you THANK YOU!!   The Marshfield Clinic has donated the time and resources for the  initial development, and the funds will pay trained interviewers to work with families to gather and validate all the medical information from each person with BBS necessary to populate the registry.  The more money we raise, the faster we can include people in the registry and the sooner doctors and researchers can get to work developing therapies and treatments for BBS.

Here's a video with all the information about the registry:
We hope to raise $75,000 as a BBS family this year, so those funds YOU helped raise along with the $10,000 Tim (the BBS President) has raised have helped us get off to a great start.

One of my new friends (another parent with a BBS child) told me he feels like the BBS family has been like a developing country without much support or resources, but that now it is becoming so empowered with so much exceptional, specialized help.

That's exciting to think about.