2023 Year-End Campaign - Letter to Our Supporters

Dear FOXG1 Research Champion,  

As you know, the FOXG1 Research Foundation’s (FRF) mission is to accelerate research to find successful therapeutics for FOXG1 syndrome and related neurological disorders while raising awareness and advocating for patients and families. 

Thanks to supporters like you, we are racing towards a cure with a clear roadmap! In six years, we have blazed a trail from basic to translational science. We have now identified a very promising Gene Replacement Therapy program that we are working to bring to clinical trials. This is the focus of our fundraising efforts.

Our next step along the road to clinical trials is Toxicology in order to test for safety. This step will cost a minimum of five million dollars and is our current fundraising objective. We anticipate the total cost to bring our lead candidate through Phase 1 2 clinical trials to be about $22M. While this will take a large fundraising effort, we’re seeing groundbreaking, curative results in preclinical data!

You are part of something that we believe will greatly improve children’s lives in the next few years. We are seeing incredible results in clinical trials for similar genetic conditions. And our work could also contribute to research for a variety of neurological disorders such as Autism. 

Together, we can help FOXG1 children live a life without suffering.

Here is how you can help towards a cure:  

FOXG1 Research Foundation c/o Nicole Johnson  

One Luckenbach Lane 

Sands Point, New York 11050 

 We would love to talk to you! Please email us at [email protected] to learn more. 

With sincere gratitude,  

Nicole Johnson and Nasha Fitter

Co-founders of the FOXG1 Research Foundation  


Impact in the last year: 

Because of supporters like you, we are immensely proud of the organization we have built, and the resources we have made available to our community. Here are some of the highlights from the past year: 

  • Successful preclinical results showing gene therapy programs can upregulate the FOXG1 gene, rescue symptoms, and do so safely.

  • Hiring of Chief Drug Development Officer to lead us successfully through clinical trials and IND filing with the FDA and other regulatory agencies. 

  • Naming Dr. Soo-Kyung Lee our Chief Scientific Officer, who runs the FOXG1 Research Center of Excellence at the University at Buffalo with a team of >20 members focused solely on FOXG1 syndrome 

  • Published paper on FOXG1 syndrome from our FOXG1 patient registry; 3 more publications underway 

  • Building of FOXG1 bioinformatics platform for all raw data and AI capabilities 

  • Implemented monthly parent support group zooms and webinars  

  • Connecting newly diagnosed families to resources, medical professionals, and other families  

  • Relocating FOXG1 Ukraine family to safety from war torn area

  • Becoming sought-after thought leaders/ speaker on podcasts and conferences