Everything comes full circle at the BBS Foundation’s 2026 Family Conference
A columnist discovers new friends, mutual support, and hope for the future
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It’d been well over a decade since I last attended a Bardet-Biedl syndrome (BBS) conference. Back then, I was a young girl who wasn’t ready to accept my diagnosis or disability. Fast-forward all these years, and I returned ready to embrace who I am and in a position to use my life story to encourage others. Meeting up with others in the BBS community and seeing how far I’ve come made the trip incredible.
The Bardet Biedl Syndrome Foundation‘s 2026 Family Conference, held in Washington, D.C., from July 31 to Aug. 1, was exhausting, but in the best way. It was a positive weekend filled with great exchanges and a wealth of information. There were so many highlights that it’s hard to focus on just one. But I think the most impactful part was connecting with others. I even became somewhat of a social butterfly and made a new close friend.
I had the opportunity to reunite with BBS Foundation Executive Director Tim Ogden, whom I hadn’t seen in person in over 15 years. Catching up face-to-face made the event even more special. I also enjoyed meeting people who were about my age. Forming those relationships reminded me that I’m not alone while living with BBS.
There is something powerful about being surrounded by others who are affected by the same rare disease, while also recognizing that no two people with BBS are exactly alike.
While I was extremely nervous about sharing my story so publicly, seeing the impact it had on others made it worth it. Afterward, many people came up to talk to me, telling me they felt encouraged or inspired. It was highly rewarding to discover that, by sharing my story, others can find hope and support, and even feel a little less alone.
The next day, I participated in a Q&A panel. One conversation that particularly touched my heart involved a mom and her daughter who has obsessive-compulsive disorder. We connected over our shared experiences, and helping her feel less alone was one of the greatest gifts I could have received.
I also enjoyed learning the latest updates about retinal degeneration gene therapy. Hope truly is on the horizon!
Of course, it wasn’t all about the sessions and the presentations. One of my favorite memories was a family dinner at a delicious Italian restaurant. The food was amazing, the perfect way to kick off the weekend together.
More than anything, I hope everyone left the conference knowing that BBS doesn’t define us. We are capable of doing so many things, and none of us has to walk this journey alone. It was a beautiful reminder that although BBS may be part of our stories, it is not the whole story.
Note: Rare Obesity News is strictly a news and information website about these disorders. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Obesity News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare obesity disorders.
