foxg1 syndrome

FOXG1 Research Foundation's Nasha Fitter Speaks At The White House Rare Disease Forum

FOXG1 Research Foundation Co-founder and CEO Nasha Fitter was the first spotlight speaker at the White House Rare Disease Forum hosted by the White House Office of Science and Technology Policy's Health Outcomes Team February 28th ahead of Rare Disease Day 2024.

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.

The FOXG1 Science Symposium 2020 - Recap

The FOXG1 Science Symposium 2020 - Recap

The virtual FOXG1 Science Symposium 2020 was a tremendous success in demonstrating the work towards advancing science to find a cure for FOXG1 syndrome. Scientists from Tokyo, the UK, Italy, California and more gathered with Biopharma industry executives and FOXG1 caregivers to share data and engage in collaborative discussions towards disease-modifying therapies. Read the recap here and watch the panel discussions.

The Rare Disease Crusaders

The Rare Disease Crusaders

I joined Ciitizen and initiated our entry into neurological diseases because I am both passionate and desperate to find an answer for my daughter. At Ciitizen, we’re creating a platform where medical records are collected on behalf of each patient, then automatically digitized into the computational data we need. From there, sophisticated machine learning technology is used to extract clinical data in order to create regulatory-grade Natural History Studies that do not require exorbitant amounts of time, energy, or money. Patient reported outcomes can then be added by us parents.

More importantly, this database of computational data we’re creating will be accessible and open to all patients, parents, caregivers, clinicians, academics, and biopharma researchers. Our goal is to eliminate the slow, manual, and expensive processes that we currently use to collect information and use the best technologies to be quick, cost-effective and more accurate when it comes to developing research.

For two UB scientists, love means studying their daughter's rare disease

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

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.