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Bardet Biedl Syndrome Foundation

Connecting families and sharing information on research, treatment, and therapies for Bardet Biedl Syndrome.

February 2014 Newsletter: Fundraising for BBS Research and Outreach

One of the reasons for transforming the association into an officially registered nonprofit was to facilitate fund-raising in support of our mission: improving the lives of all people affected by BBS. Delays in getting certified as a Federal 501©3 have put a kink in some of our plans (see the following page for details), but it hasn’t stopped them.

Our first two major fund-raising projects are partnerships with the Marshfield Clinic and the Wynn Institute for Vision Research at the University of Iowa. We have made arrangements for both organizations to soon begin accepting donations earmarked donations for BBS projects. One such project is the creation of a BBS registry.

You can read all about that in the registry article. The second is an effort to launch a clinical trial of TUDCA to slow retinal degeneration in BBS. Conducting clinical trials is extremely expensive, typically costing in excess of $1 million. There are organizations that grant such large sums for research. We will be raising funds to help support Dr. Arlene Drack and her team at the University of Iowa in pursuing such grants.

Of course, we have a number of additional projects within the association that could move faster with some donations: a new and better website for the association, a revised BBS handbook, a library of research on BBS translated into “plain English”, educational videos about BBS, etc. So if you’d like to donate to the association, or contribute to one of these projects with your time, please contact us!