Awesome work Jason !
Chief Executive | Combat Veteran | Owner | Founder | Entrepreneur | NPO Director & Chairman of the Board
I was honored to take part in the 2025 BBS summit in Chicago last week. 21 of the most committed and passionate people surrounding this network came together to develop the next 18 months of a promise. A promise to our children to create a better life for them and everyone affected by this syndrome. With the recent gift from the Chan Zuckerberg Initiative, we now have a renewed sense of hope on this journey. We are grateful! A special thank you to all of the members of the BBS board and families for taking part in this summit. Timothy Ogden, Alex Ogeka, Nate Arnesen, Steve Johnston, MD, MBA. and so many more. Thank you to our friends who traveled from faraway places (Canada, United Kindom, and the Netherlands) to represent their families back home. Uniting behind a common goal gives perspective. We support you Bendert De Graaf, Tonia Hymers, Bardet Biedl Syndroom Stichting, Bardet-Biedl Syndrome UK. Thank you to Molly Henry and Rachel Tierney for all the behind-the-scenes work that keeps this path lit for everyone. I also want to express my deepest gratitude to the members of the medical community who continue to work tirelessly to ensure that tomorrow brings more therapies and solutions to the many challenges we all face. Ann & Robert H. Lurie Children's Hospital of Chicago, David Meeker, Jeremy Pomeroy, Doctor Erica Davis, Marshfield Clinic Health System, and so many others. If you want to know more about Bardet-Biedl Syndrome (BBS), visit www.bardetbiedl.org