FOXG1 Research Foundation

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FOXG1 Research Foundation

The FOXG1 Research Foundation is the global organization dedicated to a cure for FOXG1 syndrome.

The FOXG1 Research Foundation (FRF) is a 501(c)(3) not-for-profit, global organization driving the research to find a cure for FOXG1 syndrome and related brain disorders. Established in 2017, the FRF is driven by a clear, strategic path to a cure guided by a prestigious Scientific Advisory Board composed of leading neurologists, geneticists, clinicians, scientists, and biopharma executives. The FR

F is centered on developing and funding the most proficient scientific strategy while advocating for FOXG1 families worldwide and being an active collaborator in the rare disease community. The FRF is also a Chan Zuckerberg Initiative "Rare As One" partner and a Rarebase collaborator. FOXG1 syndrome is a rare neurological gestational disorder that affects nearly 1,000 children worldwide. FOXG1 characteristics include epilepsy and severe physical and cognitive disabilities. The FOXG1 gene is linked to other brain disorders affecting millions including autism, schizophrenia, Alzheimer's, brain cancers, and more. FOXG1 Research Foundation is dedicated to:
1) Finding disease-modifying therapies and ultimately a cure for ALL FOXG1 patients in the world (all ages, all types of mutations, all geographies)
2) Providing equal access to a cure and therapies for ALL FOXG1 patients in the world. We will share our process and progress and results publicly through this page and on our website www.FOXG1Research.org

05/22/2026

We are so proud to share that Abey Weitzman is a Columbia University graduate.

Read that again.

Abey has FOXG1 syndrome. He is also an Ivy League graduate, proving to the world what is possible and to never underestimate someone because of their disabilities.

Today we received an email from Abey himself. He wrote:

“I am proud to say that I am now a Columbia University graduate. I wanted to reach out and say thank you for helping me achieve this dream. It was an incredible and sometimes exhausting journey. I now plan on finishing my disability horror novel and continuing my disability advocacy work.”

A novel. Advocacy. A Columbia diploma.

Abey, you have shown the world what is possible when a person is given the tools to communicate. You have shown us that you are brilliant, funny, thoughtful, and determined — and you have given parents like us a completely new view of what our children are capable of.

Abey is the only person with FOXG1 syndrome who serves on our advisory board. His brilliant essays give a voice to those without the ability to communicate — offering parents like us a window into what our own children might want us to know.

We carry your words into every meeting where decisions are made about this work. We say to each other, again and again: don’t forget what Abey said.

You guide us.

Congratulations to Abey, to his extraordinary parents and siblings, and to his wonderful Mahmood — who has walked this journey alongside him every step of the way.

We cannot wait to see where your future takes you. Explore the world. Keep writing. Keep advocating. Keep showing all of us what is possible.

We love you.

05/20/2026

We are thrilled to announce the appointment of Mallory Lauth as the Chief Clinical Operations Officer of the FOXG1 Research Foundation.

Mallory has been with us since the very beginning of our gene therapy clinical roadmap, playing a key role behind the scenes to move our program forward. We’re excited to have her officially on the FRF team as we enter the clinic ogether.
 “We are thankful for Mallory’s tireless work. She is an incredible partner and fearless advocate for FRF in all our external interactions and negotiations, and is integral to us being able to do what for outsiders seems impossible for such a small team. We will continue to do what others believe impossible.”
- Dr. G*i Ayalon, Chief Drug Development Officer

Congratulations Mallory!

05/18/2026

Today, our co-founder takes the stage as the keynote commencement speaker at Stony Brook School of Health Professions! 🎓✨

Speaking to the Class of 2026 — the clinicians, therapists, and researchers who will shape the future of patient care — Nicole brings everything she has learned as Josie’s mom and as cofounder of the FOXG1 Research Foundation.

Congratulations, Class of 2026!

Watch Nicole’s Commencement Speech: https://www.youtube.com/live/iY0_6fWRxYA?t=2262&si=7Ae1tr93659lv4Pc

05/11/2026

Priscilla Chan, co-founder of the Chan Zuckerberg Initiative — one of the most influential science philanthropies in the world — was nearly brought to tears on Stanford Medicine’s “The Future of Medicine” while talking about our parent-led gene therapy.

This speaks volumes about the model we’re pioneering for rare diseases and the hope it represents for families of children who deserve treatments.

Thank you, Dr. Priscilla Chan and the Chan Zuckerberg Initiative for your belief in our work and for helping make this moment possible.

Head to our blog to watch the full interview and how you can join the mission.

04/17/2026

Happy Birthday Nicole!
Nicole, this year more than ever, we see what your love and determination has made possible.

Wishing you a day full of joy, good music, and every bit of love you pour into this community — sent right back to you.

Join us in wishing her a happy birthday in the comments 🎉

04/14/2026

We are proud to share this CNBC Cures feature on our co-founder, Nasha Fitter.

Nasha is not only a co-founder of FOXG1 Research Foundation. She also took on another co-founder role to help make the rare disease journey easier, safer, and more understandable for families like ours.

After her daughter Amara was diagnosed with FOXG1 syndrome, Nasha experienced what so many rare disease parents know too well: little information, a mountain of paperwork, endless appointments, and nowhere to turn for clear guidance. Families are often left piecing together care on their own while making critical decisions under enormous pressure.

Nasha helped build Citizen Health to change that, using the power of AI to create a better way for families to access support, learn from shared patient experience, and help the medical and research communities more fully understand what patients and caregivers go through.

That work has had real impact for FOXG1 families and for our foundation. The natural history data collected through Citizen Health has helped shape key parts of our treatment development strategy.

We are deeply proud of Nasha and grateful for the extraordinary way she continues to turn personal experience into lasting impact for rare disease families.

Read the article here: https://www.cnbc.com/amp/2026/04/11/citizen-health-rare-disease-treatment-ai.html

04/06/2026

More exciting news from the FDA!
Our gene therapy candidate, FRF-001, was granted Rare Disease Evidence Principles (RDEP) status from the US Food and Drug Administration (FDA).

RDEP was introduced by FDA to provide greater speed and predictability in the review of therapies intended to treat rare diseases with very small patient populations with significant unmet medical need and that are driven by a known genetic defect. Through the RDEP process, sponsors receive clearer guidance on the evidence that can be used to demonstrate substantial evidence of effectiveness, thereby better enabling the generation of substantive data that could inform regulatory decisions and submissions.

Importantly, approval under the RDEP process may be based on one adequate and well-controlled study plus robust confirmatory evidence, which is in line with our clinical development strategy for FRF-001.

04/03/2026

At our Evening of Music for FOXG1, our co-founder, Nicole Johnson, shared the moment that started it all.

Nine years later, we know more than ever before, there is a research strategy — and most importantly, there is hope.

Follow along as we share more from our weekend in Paris. 🇫🇷

03/27/2026

Last night in Paris, at the Evening of Music for FOXG1 fundraiser, a very special guest from the UK joined to share the song she wrote after meeting Nicole and learning about Josie.

This song was written through Josie’s perspective for all children with FOXG1 and all rare diseases and disabilities.

The room was filled with FOXG1 parents from all over the world as well as new supporters. Isabella’s beautiful voice coupled with these words, brought the room to tears.
What a powerful poignant moment. 🎶

03/26/2026

After hearing Nicole’s story as a mother advocating for her daughter, Josie, Isabella Coulstock went home and wrote a song.

“Who I Am” is written from Josie to her mom.
A reminder that even when words are limited, connection is not.

That love, identity, and understanding exist far beyond what can be spoken.

The song was recorded in New York with the band Black Square and created to be shared with Nicole—and with the entire FOXG1 community.

This piece is dedicated to every child with FOXG1 syndrome, and every child living with a rare disease.
🎼 Experience it live in Paris today!
🎟️ Tickets - https://bit.ly/4tcnV0g

Address

1051 Port Washington Boulevard #1496
Port Washington, NY
11050

Website

http://www.FOXG1research.org/

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