Who is The FOXG1 Research Foundation?

The FOXG1 Research Foundation (FRF) is the parent-led, global rare disease patient organization driving the research to find successful and precise treatments, and ultimately a cure, for every individual in the world with FOXG1 syndrome, while deeply focusing on patient advocacy, education, and family support.

The FOXG1 Research Foundation Mission:

It is the mission of the FOXG1 Research Foundation to accelerate research to find successful therapeutics for FOXG1 syndrome and related neurological disorders while raising awareness, and supporting and advocating for patients and families worldwide.

The FRF mission includes:

  • Funding cutting-edge science by the world's leading researchers that is integral along the Path to a Cure.

  • Finding precise treatments and ultimately a cure for all patients with FOXG1 syndrome in the world

    • all ages, all mutation types, all geographies

  • Providing equal access to therapeutics for all patients with FOXG1 syndrome in the world

  • Uncovering the links between FOXG1 and related disorders, including Autism Spectrum Disorder

  • Advocating for FOXG1 patients worldwide

  • Supporting FOXG1 families worldwide

  • Continuously identifying gaps that slow rare disease drug development, and developing solutions.

  • Pioneering new methods to accelerate the road to rare disease drug development

  • Raising awareness about FOXG1 syndrome and rare diseases

Since 2017 The FOXG1 Research Foundation has:

  • Raised more than $7M 

  • Funded 11 academic labs - basic and translational science

  • Created a suite of assets viable to researchers worldwide including: mouse models, fibroblasts, iPSC lines

  • Uncovered groundbreaking preclinical gene therapy data showing rescue of brain structure deficits

  • Pioneered novel Natural History Study platform using Machine Leanring; now used by > 100 rare disease groups

  • Publication on Patient Registry data

  • Launched three international FOXG1 Research Foundation chapters 

  • Connected the global FOXG1 community

  • Become Chan Zuckerberg Initiative 'Rare as One' partners and mentors

  • Nominated as Global Genes Champions of Hope & Founders Award

  • Host the FOXg1 Syndrome Science Symposiums and Parents Conferences

  • Developed first genetic therapy compound moving toward human clinical trials and IND filing

*Spelling Key: FOXG1 - the gene in humans | Foxg1- the gene in mouse models | FOXG1 and Foxg1 in italics- refers to the proteins, not the gene itself, respectively in humans and models.