On November 5th, 2022 The FOXG1 Research Foundation hosted the first-ever FOXG1 Syndrome Parents Conference in Pompano Beach, Florida.

This special event was for parents, caretakers, and clinicians and it followed our third private FOXG1 Science Symposium (November 3rd), where scientists and industry executives came together to share unpublished data and collaborate to find successful therapeutics for FOXG1 syndrome. Scientists from every corner of the globe were in attendance including Australia, Japan, Italy, England, Germany, and the U.S.

Since our first science symposium in 2018, it is truly incredible how much science is underway on this road to finding successful therapeutics for FOXG1 syndrome.  We will need two days just for scientists to present their data next year! 

After the long day jam-packed with presentations, we hosted an intimate dinner at a restaurant overlooking the ocean just a mile up the road. This was an invaluable opportunity for our scientists to get to know each other more personally. After dinner, we all walked back to the hotel on the beach. We will never forget a moment like this. 

The FOXG1 Syndrome Parents Conference was the most incredible milestone since we launched the FOXG1 Research Foundation in 2017. 

The theme was “Connect - Learn - Inspire” and it exceeded our expectations. 

As our co-founder, Nasha, said:

“Five years ago we were praying for scientists to work on this disease, for doctors to understand it, and for more parents to join our cause. It was an overwhelming feeling to be in a room with 40 scientists and experts collaborating on the nuances of finding a treatment. To have some of the best neurologists globally thinking through a standard of care guide and weeding through our data; to be surrounded by parents and caregivers who had flown in from all over the world. And to meet some precious FOXG1 children who reminded us why the exhausting days are worth it. I don’t cry often but I cried a lot last week. With hard work and determination, I know now more than ever we will find a cure.”

The topics covered throughout the day included the road to genetic therapy trials from our mentor Allyson Berent at FAST; the FOXG1 Research science strategy; the clinical findings of FOXG1 syndrome from our natural history study and registry, specialists sessions including three neurologists who collectively see the most FOXG1 patients in the world, a GI and pulmonology specialist, Dr. Christine Roman spoke on CVI, and we were all moved to tears by the beautiful words of a FOXG1 mom and therapist, as well as Rare Mama, Nikki McIntosh. Please see the entire schedule HERE.

The best news - you can watch any session from the FOXG1 Parents Conference session whenever you’d like. 

We broke out every session and added them as separate videos to our YouTube channel. This way parents can share specific sessions with their children’s care teams.

After a long day filled with information and inspiration, we hosted a beautiful dinner on the beach. The weather was perfect and the mood was elated. It was as if we were celebrating a family reunion. With delicious food and heartfelt speeches from parents, scientists, and clinicians, we laughed, cried, and made memories for a lifetime!

Thank you to everyone who attended for being committed to helping all children with FOXG1 syndrome and more. We are lucky to have such a brilliant and dedicated team!

Thanks to our sponsors the Chan Zuckerberg Initiative, American Airlines, and Teneo for their support to make this event possible.

Learn more information on our website HERE.