Dec 12, 2023
This week we are talking about a rare condition, FOXG1. This syndrome is a rare genetic neurodevelopmental disorder caused by a mutation in the FOXG1 gene. FOXG1 gene is one of the first and most important genes for early brain development and when impaired, causes cognitive and physical disabilities as well as medical complexities including epilepsy.
Every child born with FOXG1 syndrome is unique as FOXG1 manifests as a spectrum where symptoms and severity vary between individuals. Our patient data shows characteristics of children with FOXG1 syndrome include: nonverbal, non-ambulatory, experience seizures, feeding problems, cortical vision impairment, movement disorders, and developmental delays. Less-severely-affected FOXG1 children often present with (ASD) Autism Spectrum Disorder as FOXG1 is an autism related gene. FOXG1 syndrome is found equally among both females and males and is geographically more prevalent where diagnostic testing is more advanced. (credits: The FoxG1 Foundation)
Our guest is a mother to a child with FoxG1, Ilissa Reich. Ilissa is a former fashion executive who transformed her career into being a fierce advocate for families of children with special needs.
When her now-3-year-old son, Eli, was diagnosed with FOXG1 Syndrome, a rare brain disorder with no cure, she spun into action and co-founded Believe in a Cure (webelieveinacure.org), a 501(c)(3) non-profit foundation working to develop a treatment for FOXG1.
Founded in 2019, Believe has raised millions of dollars and
funded over 40 research and development projects around the
world.
long the way, the foundation has partnered with preeminent institutions ranging from the National Institutes of Health to Harvard, MIT, and Tel Aviv University, to biotechnology companies in Europe, Asia, and the United States.
Renowned
scientists from industry and academia serve on the scientific
advisory board of the foundation, and several notable leaders serve
on the foundation’s lay advisory council, including former U.S.
senators Joe Lieberman and Paul Kirk, the former CEO of Staples Ron
Sargent, mediation czar Ken Feinberg, and many more.
This journey has opened Ilissa’s eyes to the experiences of
countless other families who struggle each day, and despite her own
anguish, Ilissa endeavored to create a platform for mothers of kids
with special needs to build community and offer
support.
She has appeared on the Today show, in People magazine, and a host of other outlets profiling her efforts.
A native Long Islander, Ilissa previously worked in fashion at notable brands Tibi, Free People, Splendid, and Alternative Apparel.
She studied business in college at The George Washington University. She lives in Port Washington with her husband, Scott, and their three children.
When asked: 'What has enabled you to be successful?' she responded-
“I always aspire to be a good role model for my children. I want to be someone they’re proud of.”