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
Global Genes features FOXG1 Research Foundation Co-founder and Executive Director, Nicole Johnson as a rare Leader. Learn about the FOXG1 organization’s strategy, mission, guiding principles, Nicole’s management philosophy, and more.
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.
Help FOXG1 Ukrainian Family Rebuild!
The FOXG1 Research Community has helped get a FOXG1 family safely out of the warn-torn Ukraine! Now, they have to rebuild thier lives. Eva is a 3-ear-old child with the severe rare disease called FOXG1 syndrome. She suffers from seizures and is disabled. They are on thier way to safely, but they lost everything. This is how you can help. Thank you!
A Look Ahead Into 2022!
2022 is set to be the most exciting year yet along the journey to cure FOXG1 syndrome. Nasha Fitter, the FOXG1 Research Foundation co-founder and CEO shares what's in store for the year ahead in this heartfelt New Year's video message.
2021 Impact Report
The FOXG1 Research Foundation is dedicated to driving science towards therapeutics and ultimately a cure for every person in the world affected with FOXG1 syndrome. While accelerating research, we are also focused on advocating for and supporting families along this difficult journey. We cannot do this without you. In 2021 we raised nearly $3M. Thank you for your support!
Rarebase launches a neuroscience drug discovery platform collaborating with 15 rare disease patient organization
Rarebase launches a neuroscience drug discovery platform collaborating with 15 rare disease patient organizations including the FOGX1 Research Foundation, SynGAP Research Fund, , STXBP1 Research Foundation, Hereditary Neuropathy Foundation, and more. The Function platform enables drug and target discovery for rare genetic diseases.
ONCE UPON A GENE - The 12 Commandments to Guide You When You're Starting a Rare Disease Patient Advocacy Group. With Nasha Fitter and Mike Graglia
Effie Parks celebrated podcast Once Upon a Gene Episode 094: FOXG1 advocate Nasha Fitter and SYNGAP1 advocate Mike Graglia are leaders in the rare disease community and two of the top parent leaders in the advocacy game. In this episode, they're sharing their knowledge, expertise and experiences in an information-packed masterclass on how to build a rare disease patient advocacy group, get funding and forge a path to a cure.
Dallas Morning News: Where is Former American Airline CEO Tom Horton? Raising Awareness for a Rare Genetic Condition.
Horton jumped into the campaign to raise awareness for the rare FOXG1 syndrome after his infant granddaughter was diagnosed in 2020.
Global Genes Podcast: Empowering Rare Disease patients With Their Own Health Recods
Global Gene’s RareCast Podcast interviews our CEO and Co-founder about our innovative Ciitizen Natural History Study and how health records empower parents and caregivers to make sure researchers really understand our children’s condition.