CombinedBrain invites FOXG1 families to go to any CombinedBrain member’s rare disease conferences to join the Biorepository for exciting Biomarker studies. Read more to find the next conference closest to you.
New Children's Book and Digital Platform "Joyfully Josie" Aims to Spark Conversations Around Disabilities, Rare Diseases, and Inclusion
Nicole Zeitzer Johnson announced today the release of her debut book, "Joyfully Josie." Designed to help parents and families discuss inclusion in the context of disabilities, this captivating children's book series aims to foster understanding of rare diseases and the experiences of medically complex individuals.
'Power of Moms': This Mom Quit Her Job To Find a Cure for Her Daughter’s Rare Disease
CafeMom:
Becoming a mother often empowers us to do things we didn't even think we were capable of. Moms break down barriers and overcome challenges and obstacles for their kids every day, and Nasha Fitter is an exceptional example of this. Nasha's daughter was diagnosed with a rare genetic disorder, FOXG1 syndrome, when she was 7 months old.
CareTalk Podcast: Why Rare Disease Research is SO Important
In the CareTalk episode, “Why Rare Disease Research is So Important” Co-host, David Williams is joined by Nasha Fitter, CEO of FOXG1 Research Foundation, which is dedicated to finding a cure for FOXG1 Syndrome and Vice President of RWE and Ciitizen Platform at Invitae, to shed light on the importance of rare disease research, the challenges it faces, and the promising developments in this field.
Dr. Soo-Kyung Lee, FOXG1 Research Foundation Scientist, Earns Grant from Simon Foundation Autism Research Initiative (SFARI) for Genomics of ASD: Pathways to Genetic Therapies
FOXG1 Syndrome Science Symposium & Parents Conference Recap
San Francisco Business Times: Unlikely Drug Hunters: How two mothers are finding hope in searching for their children’s cures
SF Business Times: Kimberly Nye and Nasha Fitter both founded organizations to seek cures for afflictions suffered by their children. Nasha Fitter didn’t have time. There had to be a better, faster way, she thought — not just for her daughter, but for other people with rare diseases. Fitter tapped her tech and entrepreneurial background to create a nonprofit, the FOXG1 Research Foundation.
2022 Impact Report
2022 Research Highlights (see details below)
Breakthrough gene therapy results showing rescue of FOXG1 brain structure, behavior, memory and cognition symptoms in animal models
Positive results on initial compound drug screens to identify molecules to increase FOXG1 levels; now moving forward to larger screens
Never-before understanding of FOXG1 biology uncovered from six FOXG1 patient human cell lines and mouse models
Successful testing of guide RNAs to increase FOXG1 expression with a CRISPRa Cas-9 system
Discovered ASO sequences (antisense gene therapy) to modulate FOXG1 expression; testing initiated with Creyon Bio
FOXG1 data package presented to several biotech companies with high interest
ONCE UPON A GENE - EPISODE 163 - How Far We've Come - with Nicole Johnson
Effie Parks talks to the co-founder of the FOXG1 Research Foundation, Nicole Johnson in this episode of Once Upon a Gene. Nicole shares the FOXG1 Research Foundation journey marking five years, and shares tips on how to throw a successful conference for scientists, clinicians and parents from all over the world
The most personalized medicine: Studying your own child’s rare condition
Article from Spectrum News, the leading site for autism research news. Excerpt:Attracting parents who are also scientists to the cause only turbocharges those efforts. Nasha Fitter, a cofounder of the FOXG1 Research Foundation, a parent-led foundation for research on an autism-linked condition called FOXG1syndrome, could hardly believe it when she stumbled on a 2017 Facebook post by FOXG1 parent Soo-Kyung Lee about a grant she and her husband, Jae Lee, both respected neuroscientists, had secured. “Hold up, you guys are parents and you’re scientists?” she remembers thinking, even before she knew of their expertise and reputation for rigor. The Lees now lead the FOXG1 Center of Excellence at the University at Buffalo in New York State and receive considerable funding from the foundation. FOXG1 families are unfortunate in many ways, Fitter says, “but we’re very fortunate with Soo and Jae.”
Global Genes Rare Leader: FOXG1 Research Foundation Co-Founder & Executive Director
The Johnson Family - Changing the World Right Here in Port Washington
FOXG1 Research Foundation co-founder and Executive Director shared her story with her hometown local magazine called Port Washington Living. This feature article celebrates the Johnson family and Nicole’s work to find a cure for FOXG1 syndrome, while helping FOXG1 families around the world, including helping the FOXG1 family in the Ukraine to safety.