A Daughter's Rare Disease Brings Mother-Father Researchers to Buffalo for Answers
Soo-Kyung Lee, Empire Innovation Professor of Biology at the University at Buffalo, has been driven to focus greater attention on FOXG1 syndrome since her daughter, Yuna, was diagnosed with the neurological condition almost nine years ago.
Douglas Levere/University at Buffalo
Waitlist is Open for Next NHS Cohort
The new digital, FOXG1 Natural History Study is funded by the Chan Zuckerberg Initiative, powered by Ciitizen, and supported by the Orphan Disease Center is a groundbreaking approach to accelerating research for FOXG1 syndrome.
Incredibly Important Surveys for all FOXG1 parents to take!
As a community, we are accelerating discovery of new treatments and therapies for FOXG1 syndrome!
One way we are doing this is by launching validated surveys, which will give us critical data for clinical trials.
Introducing - FOXG1 Research Foundation Australia!
We are thrilled to announce the first official FOXG1 Research Foundation affiliate chapter in Australia, led by Steve Hille. Steve and his incredible team will lead all efforts in Australia to help support the research towards a cure for FOXG1 syndrome.
What Does this New Digital Natural History Study Mean for Me?
CZI granted the FRF a half a million dollar grant to launch a next generation, machine-learning, Natural History Study. What does the new digital Natural History Study mean for FOXG1 parents? How will it help make their lives easier ? Why is it so important to help get to treatments for FOXG1 syndrome?
FOXG1 Research Foundation to Pioneer a Machine Learning Approach to Accelerate Rare Disease Research with Support From the Chan Zuckerberg Initiative
The parent-led FOXG1 Research Foundation (FRF) announced today a nearly $500k grant from the Chan Zuckerberg Initiative (CZI) to revolutionize the ability for patient-led advocacy groups to use machine learning to help accelerate rare disease drug development.
November 2020 Research Update : Creyon Bio Takes on FOXG1 for ASOs!
November 2020 FOXG1 Research Foundation Research Update: Two Biotech companies are investing in FOXG1 syndrome for gene therapy and ASO therapy. FOXG1 Research is moving into screening drugs and testing potential therapies with a newly assembled consortium of esteemed scientists.
Taysha Gene Therapies Takes on FOXG1 Syndrome!
Taysha Gene Therapies adds FOXG1 syndrome to the pipeline of neurodegenerative CNS disorders; Taysha will develop gene developing gene replacement therapy (TSHA-117) for FOXG1 syndrome, using their novel miRNA target panel.
Riepilogo del FOXG1 Science Symposium 2020
The Italian translation of the summary of the FOXG1 Science Symposium 2020. Riepilogo del FOXG1 Science Symposium 2020
Once Upon A Gene Podcast Interview with Nasha Fitter on the new platform using medial records to advance research for rare disorders
In the latest episode of the Once Upon a Gene Podcast hosted by Effie Parks, we hear from the FOXG1 Research Foudnation CEO, Nasha Fitter on the revolutionary platform she’s spearheading at Ciitizen to digitally collect patients medical records and use machine learning to advance research and the road to approved therapies.