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
A Daughter's Rare Disease Brings Mother-Father Researchers to Buffalo for Answers
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.
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.
FOXG1 Symposium Advances Science, Gives Hope to Families Battling Rare Disease
America Trends TV interviews FOXG1 Research Co-Founder on How to be an Advocate for Your Child
For two UB scientists, love means studying their daughter's rare disease
University at Buffalo biologists Soo-Kyung Lee (left) and Jae Lee are researching the FOXG1 gene. Their daughter, Yuna, has a mutation in the gene, which has severely impacted her development. The Lees hope their scientific work will lead to a treatment. Credit: Douglas Levere / University at Buffalo.
The Naked Scientist: FOXG1 Syndrome: Fighting the Odds
Listener Vivek got in touch with a question about a rare genetic disease his son has, called FOXG1 Syndrome. In fact, it's so rare - and so newly-discovered - that only about six hundred people in the world have been diagnosed. Kids with FOXG1 have severe developmental delays; in Vivek's words, "everything that can go wrong - it's gone wrong with him." But the parents of FOXG1 children have been unusually tenacious when it comes to shaping the course of science. In this programme we meet those people blurring the line - metaphorically speaking - between the brain and the heart.
Chan Zuckerberg Initiative Features FOXG1 Research
Rare disease is anything but rare. As many as 7,000 rare diseases affect 400 million people globally. The vast majority are not well understood, and less than 5% have approved treatments. Yet worldwide, patients are meeting these challenges head on. The Rare As One Project is committed to uniting these communities in their quest for cures.
The FOXG1 Research Foundation Announces the Launch of its Global Patient Registry to Accelerate Research For the Rare Genetic Disease, FOXG1 Syndrome
