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Bardet Biedl Syndrome Family Association

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

February 2014 Newsletter: Nonprofit Registration Update

In our last newsletter, we shared that we were converting the association into an incorporated non-profit that can raise funds. We’ve made some important strides but also hit some significant roadblocks. First the good news: the Bardet Biedl Syndrome Foundation is now an officially incorporated non-profit in the State of Delaware. We chose the name Bardet Biedl Syndrome Foundation so that the organization would be more easily recognizable as a non-profit. However, we are also recognized under the name Bardet Biedl Syndrome Family Association (this is a point of corporate registration known as “doing business as” or dba). Both names work.

We chose to register in Delaware as it is one of the easiest, cheapest and simplest states to register in. As part of the process of registering as a non-profit corporation in Delaware we had to revise our by-laws to comply with state requirements. These changes were relatively minor but do reflect best practices for running a true non-profit organization. If you have any questions about them, please contact us.

Unfortunately, being recognized as a non-profit corporation is only the first step. After registering in Delaware, you have to go through an additional process to be recognized as a federal non-profit with a 501©3 designation. This is the designation necessary to accept tax-deductible donations. The application is an arduous process in and of itself, but if you’ve followed the national news this year you know that there has been some controversy over how the IRS has processed applications for federal non-profit status. As a result, the IRS stopped processing all applications for several months. That delay was compounded by the federal government shutdown this fall. The bottom line is the IRS is approximately 70,000 applications behind in processing. It may take as much as a year before we get our approval. The only thing that the delay affects is our ability to accept tax deductible donations directly. We can still accept donations and continue our normal operations. We’ve also made arrangements with the Marshfield Clinic and the University of Iowa to accept donations for specific BBSFA-endorsed projects. (Read more about that in the fundraising update).