The 2024 FOXG1 Syndrome Parents Conference will be held November 15th-17th, 2024 at the B Ocean Resort in Fort Lauderdale.

In this retreat-setting, FOXG1 parents from all over the world will join leading scientists and FOXG1 clinicians to learn all about the FOXG1 Research Foundation’s strategy towards a cure, the latest clinical findings of FOXG1 syndrome, and parenting children with complex needs.

We hope you will leave with newfound hope for the future. We can’t wait to bring our community together to support and uplift one another.

Registration is now closed

For any questions, please contact [email protected]

Can’t Make it to Florida? Watch the Live Stream!

We invite you to attend virtually from anywhere in the world. Join us live on Saturday, November 16th to hear from leading experts and learn about the latest advancements in FOXG1 research. You will have an opportunity to use the live chat to participate during the Q&A sessions.

Opening Keynote Speaker

Terry Pirovolakis
CEO of Elpida Therapeutics; Rare Disease Dad

Terry Pirovolakis is a rare disease crusader and the father of Michael, who has spastic paraplegia type 50 (SPG50), a slow progressing neurodegenerative disorder. Mr. Pirovolakis’ fight to find a cure for his son could also transform the way that rare diseases are treated. Shortly after Michael’s diagnosis, Terry began researching, reading scientific journals and meeting with gene therapy experts. A month later he signed a contract to start a gene therapy program. It took over a dozen research institutions and laboratories working throughout the globe to develop a treatment for Michael. Then, last December Health Canada formally granted regulatory approval for the clinical treatment that would, hopefully, save the life of Michael and all those affected by SPG50. Mr. Pirovolakis was so moved by this ordeal that he wants to change the way rare diseases are approached at the national level. He's hosting free monthly gene therapy courses (Genes 101, Genes 102, and Genes 103) to help other families advance their own discovery programs.

SPEAKERS

Nasha Fitter
CEO of the FOXG1 Research Foundation

Nicole Johnson
Co-Founder, Executive Director FOXG1 Research Foundation

Tom Horton
Former Chairman and Chief Executive Officer of American Airlines, partner of Global
Infrastructure Partners, lead director at Walmart Inc. and General Electric Corp

 

Dr. Soo-Kyung Lee
Chief Scientific Officer of the FOXG1 Research Foundation

Gai Ayalon, Ph.D.
Chief Drug Development Officer of the FOXG1 Research Foundation

 
 

Elli Brimble
Director of Clinical Research of the FOXG1 Research Foundation

Kopika Kuhathaas
Research Genetic Counselor of the FOXG1 Research Foundation

 

Faith Ihekweazu, MD, MS
Assistant Professor, Cultural Awareness and Engagement Advisor, Pediatric Gastroenterology, Hepatology and Nutrition at Texas Children's Hospital Baylor College of Medicine

Dr. Amanda Pong
Director Pediatric Epilepsy at Mid-Atlantic Epilepsy & Sleep Center, Bethesda, MD

Timothy Benke, MD, PhD
Prof Pediatrics, Neurology, and Pharmacology at University of Colorado School of Medicine; Neurologist at Children’s Hospital of Colorado; Director of Research-Neurosciences Institute

The FOXG1 Syndrome Lived Experience

Abraham “Abey” Weitzman
For the first time, we will share the FOXG1 patient experience directly from a FOXG1 patient. Abraham Weitzman is a 21-year-old student at Columbia University in New York City who was diagnosed with FOXG1 syndrome at the age of 19. He spent his entire life without a name for the syndrome that caused his physical disabilities. Thanks to a custom communications device designed by his parents, Abey communicates both beautifully and brilliantly.

Abey has turned our rare disease community upside down, challenging the notion that our children are intellectually disabled. He demonstrates that with the right tools, our children understand everything and can communicate effectively. Abey is the first FOXG1 patient to join the FOXG1 Research Foundation Advisory Board. During his presentation, he will communicate through his device with his helper reading his words for the audience.

Closing Keynote

Effie Parks
Host of Once Upon A Gene Podcast

Effie Parks is like so many parents of children with rare diseases. She does not have a medical background. She was a new mom, with many questions about being a mother to her firstborn, and was then confronted with the realization that something was not right with her baby. Like many parents of children with rare diseases, she did not give up until she found an answer, and then she kept asking questions and asking for more information. She ended up starting a podcast, Once Upon a Gene, to help her cope with being a parent of a child with a rare disease, and to get the answers to her questions.

Thank you to our sponsors!

Thank you so much to our valued sponsors and supporters who make this event possible.

Schedule of Events

Friday November 15

  • 4:00 pm - Registration Desk opens

  • 6:00 pm - Welcome Reception

Saturday November 16

  • 7:00 am - Group Yoga on the beach

  • 9:00 am - Welcome with Nasha Fitter & Tom Horton

  • 9:25 am - Opening Keynote with Terry Pirovalakis: Cure SPG50 - Journey to Cure Michael

  • 10:00 am - FOXG1 Science Session with Dr. Soo-Kyung Lee & Dr. Gai Ayalon
    The roadmap to treatments for FOXG1 syndrome

  • 11:35 pm - FOXG1 Syndrome Patient Journey with Elli Brimble and Kopika Kuhathaas
    Clinical findings of FOXG1 syndrome

  • 12:35 pm - FOXG1 Clinical Trial Readiness panel with Dr. Gai Ayalon, Elli Brimble, and Terry Pirovalakis,

    Moderated by Nasha Fitter.

    Understanding the end points, process, and design of FOXG1 gene therapy clinical trials

  • 1:00 pm - Lunch

  • 2:05 pm - FOXG1 Clinicians Sessions

    • Understanding Anti-Seizure Medications in DEE - Dr. Amanda Pong

    • FOXG1 Seizures and Sleep - Dr. Tim Benke

    • Diving into GI in FOXG1 Patients - Dr. Faith D. Ihekweazu

  • 3:35 pm - My FOXG1 Lived Experience - Abey Weitzman

  • 4:25 pm - Closing Keynote with Effie Parks- Echoes of Resilience - Lessons of Love and Strength

  • 4:45 pm - Closing Remarks with Nicole Johnson

  • 6:00 pm - Dinner on the Marina Terrace

Sunday November 17

  • 7:30 am - Once Upon a Gene Group Walk/Run on the Beach with
    Effie Parks

  • 9:00 am - 12:00 pm - Parent Round table discussions and workshops

*times and sessions subject to change*

Accommodations

We planned this event at the B Ocean Resort in Fort Lauderdale to give parents plenty of sunshine, relaxation, and fun during this conference. Find beachside bliss at B Ocean Resort located directly on the famous Fort Lauderdale Beach and just minutes from Fort Lauderdale-Hollywood International Airport, Port Everglades, and downtown Las Olas Boulevard.

Things to Do in Fort Lauderdale…

Recap of the 2022 FOXG1 Parent Conference

If you missed the 2022 conference, you can watch all the sessions on our Youtube Channel.

We are so grateful to our sponsors who help us host this amazing event. If you would like to be a sponsor of an upcoming conference, please click the button below.