10 minutes with FOXG1 Super dad Greg Wells \ By M-Team Cares
From the M-team cares blog: With Father’s Day coming up this Sunday, we wanted to know what being a father to children with disabilities really looks and feels like. So we turned to Greg Wells, rock-star dad of two wonderful daughters, Alli and Emma, both with FoxG1. We were touched by his honesty and humility in sharing what fatherhood means in his world. And, after hearing what he had to say, we're pretty sure that Alli and Emma are the luckiest girls in the world to have Greg for a dad!
Meet FOXG1 Mom, Angie Van Wingerden : 10 By MTeam cares
Meet Angie, mom to Eila and twin brothers Jack and Willem. Inspired to contribute her skills toward creating a better life for Eila who was born with a rare genetic condition called FOXG1, Angie volunteers as the CFO and Head of Operations for the FOXG1 Research Foundation.
Below, Angie tells us more about her work with the FOXG1 Foundation, shares a few stories of life with Elia and talks about what it’s like - both the challenges and the rewards - to be a mom to a child with special needs.
America Trends TV interviews FOXG1 Research Co-Founder on How to be an Advocate for Your Child
FOXG1 Research Foundation Co-founder and mom to Josie, Nicole Johnson, joined America TV to share the most important lessons how she has learned about being an advocate for a medically complex child with an ultra 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
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
Celebrating Rare Disease Day 2019, The FOXG1 Research Foundation, today, launched the critically important FOXG1 Syndrome Patient Registry developed in collaboration with Stanford University and digital health company, Beneufit.
January Newsletter: Big Things in 2019
Looking Back. Moving Ahead.
Wow! 2018 was an incredible first year for the FOXG1 Research Foundation! We cannot thank our supporters, partners, and donors enough for helping to make 2018 an enormously successful year!
2018 Key accomplishments:
• Raised $1.3 Million for research
• Assembled a Scientific Advisory Board consisting of 16 of the world's leaders in
their fields.
• Funded six esteemed scientists' projects along our Path to a Cure in the USA,
UK, and Italy
• Launched the most comprehensive study into FOXG1 to-date,
with eight mouse models of all known FOXG1 categories.
• Developed a global FOXG1 Syndrome Patient Registry
• Developed an iPSC line Patient Biobank
The First FOXG1 Scientists Symposium - A Recap.
The first FOXG1 symposium was a tremendous success in bringing together scientists from around the world who are interested in research around FOXG1 to collaborate with one another to find a cure. Scientists from Japan, Australia, Italy, the UK, the US, and more, presented and held deep-diving sessions to discuss what we know and what we need to know to drive research for FOXG1 syndrome.
For Yuna: OHSU Scientist Unveils Origins Of Daughter’s Rare Condition: Study Findings Could Lead To New Treatment Options For FOXG1 Syndrome
For more than 20 years, Soo and Jae W. Lee have studied the specialized functions of transcription factors including FOX proteins, a family of 40-plus genes integral to the lifetime development and function of such organs as the brain and heart.
WFAN "Public Affairs" Discussion with FOXG1 Research Co-Founder Nicole Zeitzer Johnson
WFAN NY Sports Radio “Public Affairs” host Bob Salter talks to the co-founder of the FOXG1 Research Foundation, Nicole Johnson, about the extraordinary experience of learning her daughter was born with a rare genetic neurological disorder called FOXG1 syndrome - without being carriers - to starting a research foundation to find a cure. Plus how CBD oil has made a tremendous impact in helping control seizures.
Infinitesimal Odds: A Scientist Finds Her Child’s Rare Illness Stems From the Gene She Studies - NYT Video
By the time her mother received the doctor’s email, Yuna Lee was already 2 years old, a child with a frightening medical mystery. Plagued with body-rattling seizures and inconsolable crying, she could not speak, walk or stand.
“Why is she suffering so much?” her mother, Soo-Kyung Lee, anguished. Brain scans, genetic tests and neurological exams yielded no answers. But when an email popped up suggesting that Yuna might have a mutation on a gene called FOXG1, Soo-Kyung froze.