A Daughter's Rare Disease Brings Mother-Father Researchers to Buffalo for Answers

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

Rare Disease Day 2021 : FOXG1 Syndrome

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Rare Disease Day is a day to raise awareness about rare diseases like FOXG1 syndrome and their impact on patients' lives.

The research we fund at FRF not only has the potential to treat and cure FOXG1 syndrome, but provides pathways to cures for the 6,000+ other rare diseases that affect over 300 million people worldwide.

Please help us reach our goal to further cutting-edge research to find therapies for every child in the world with FOXG1 syndrome and to help pave the way for rare diseases at large.

Enjoy some Rare Disease Day 2021 FOXG1 Features




Please feel free to join us on this incredible mission! [email protected]

Thank you for your support!

"Inside Research with Nasha" - Repurposed Drug Screening for FOXG1

We’re kicking off a new series called “Inside Research with Nasha.

Our FOXG1 Research strategy is to leave no stone unturned. We’re looking at every possible angle in science to find disease-modifying therapies and ultimately a cure for FOXG1 syndrome and we want to keep everyone informed along the way. We’re also taking this opportunity to really explain what so many buzz words in science mean and how they fit into the research projects we are funding.

Today, we’re very excited to talk about our small molecule drug screening projects. Nasha explains some of those buzz words that covid made mainstream, like high-throughput screening, repurposing, small molecules, and more.

You can find more information about our Research Projects, our Path to a Cure and our FOXG1 Science Team on our website.

Please follow us on social @FOXG1Research so you don’t miss any of our Inside Research updates!

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.