The Story of BBSF

Where we started

Families impacted by Bardet Biedl Syndrome (BBS) first began to connect in the early 90’s. In 2004, a Foundation Fighting Blindness conference led to the formation of a separate BBS-specific group, using mailing lists and Yahoo newsgroups to connect and provide support. This early stage support group evolved into more structured gatherings, with the first BBS-specific meeting hosted by Dr. Richard Lewis and John Weir in Houston, Texas in 2006, followed by a second gathering at Baylor College in 2008.

At this point, the informal association had formed its first draft of organizational bylaws. Ruth Dameron served as President and Mary Morris as Vice-President. While in office, Ruth and Mary organized the first BBS Family Association conference at Duke University in 2010, followed by another conference in 2012 where Tim Ogden was elected President. The ‘Families of BBS’ Facebook page was launched within that same year, further connecting the growing community.

In 2013, the Bardet Biedl Syndrome Foundation was officially incorporated as a nonprofit organization under Tim Ogden’s leadership.

Leaps and Bounds

This same year, the Clinical Registry Investigating Bardet Biedl Syndrome (CRIBBS) launched to further patient-researcher collaboration and understanding. Over the years, national conferences were hosted in locations like Marshfield Clinic, Duke University, and Salt Lake City, expanding to regional conferences. Bylaws were updated to streamline governance, allowing board elections without general membership voting. Tim Ogden, Alex Ogeka, Nate Arnesen, and Dave Pothier formed the elected board in 2018.

The foundation’s fundraising efforts became more ambitious, beginning with events like the Rocky Ride, One Shining Moment, and Bring Light to BBS, and later introducing Birdies for BBS, Cruisin’ for Emmie, and the 100K Challenge.

International cooperation grew as well. BBS International was formed in 2020 with members from the U.S., France, the U.K., the Netherlands, Italy, Norway, and Germany. Conferences expanded in reach, including an international gathering in Minneapolis with 75 families, and the first Research Summit was held. Community engagement deepened with the introduction of Community Liaisons and the establishment of virtual conferences, including one with 100 families attending in 2024.

Today, the Bardet Biedl Syndrome Foundation continues to lead the way in advocacy, research, and support for the BBS community, growing from a small mailing list to a global force for change.

Building the future of BBSF

At the end of 2024, the Bardet Biedl Syndrome Foundation was awarded a $800,000 grant over five years through the Chan Zuckerberg Initiative’s Rare As One Network. This grant supports efforts to amplify the patient voice and build collaborative, patient-centered research networks in the rare disease community. The grant also provides access to training, mentorship, and networking resources through CZI, helping the Foundation advance its mission with a focus on equity, inclusion, and long-term sustainability.

In March, 2025,  the Bardet Biedl Syndrome Foundation held a landmark Strategy Summit, bringing together individuals with BBS, families, researchers, and international partners to shape a bold new direction for the Foundation. Key priorities include transitioning to a professionally staffed organization, expanding support for individuals and families, strengthening research and clinical collaboration, and enhancing global outreach. These efforts aim to amplify the global BBS voice, foster collaboration, and drive meaningful progress in care, research, and community support. Click the link below to learn more about the Summit and the future direction of BBSF.