Family Races Against Time to Save 2-year-old Son
PORT WASHINGTON, N.Y., April 28, 2021 /PRNewswire/ -- On their son Eli's second birthday, Ilissa and Scott Reich announced the public launch of their 501(c)(3) non-profit foundation, Believe in a Cure.
Believe in a Cure's mission is to find and fund a cure for FOXG1 Syndrome, a rare brain disorder that afflicts Eli Reich and some 750 other children worldwide. Most patients are unable to walk, talk, or do anything independently. The majority of patients also suffer dangerous seizures and have visual impairment, sleep and movement disorders, general irritability, and premature death.
"When we were given this diagnosis, it felt like a repeated gut punch," said Ilissa. "To learn that your child won't have any quality of life is at once frightening, overwhelming, and crushing. We were told that no treatment exists and that the situation was hopeless."
The Reich's converted their grief into action and founded Believe in a Cure to fund research and drug development. They have projects and collaborations underway at leading academic institutions around the world.
It turns out, the situation is not hopeless. Research already funded by Believe in a Cure has indicated that a treatment for FOXG1 Syndrome is attainable due to recent scientific advances like gene therapy, gene editing, and drug repurposing.
"Our preliminary data is showing that reversibility of the condition is possible, which is truly incredible and gives us real hope," said Scott. "We are catalyzing global collaboration with leading experts as we race against time."
Most rare diseases do not attract the attention of pharmaceutical companies for commercial reasons, so Believe in a Cure is building a grassroots community network to raise funds and awareness.
"No one is more motivated than a parent seeking to save their child," said Ilissa. "We've basically had to become scientists overnight while caring for our kids and managing Eli's countless therapies and medical appointments."
FOXG1 Syndrome is caused by a mutation in the FOXG1 gene, which is critical for cognition. Patients with this condition do not have the right amount of the FOXG1 protein that the gene creates, which is what causes such severe deficits.
"The FOXG1 gene has scientific links to more common diseases like Alzheimer's, schizophrenia, and brain tumors, and it's on the Autism Spectrum," noted Scott. "So advances in our work can potentially have broader application."
Believe in a Cure has a renowned Scientific Advisory Board of leading academics and industry experts, as well as a notable Advisory Council composed of former members of Congress, business leaders, philanthropists and more. A brief video of their story can be seen here.
"It takes millions to develop a new drug, which is why we've turned to our community for help, and time is of the essence. We have an opportunity to save lives, and our work will help push the field forward in ways that can benefit generations to come," added Ilissa.
For more information, visit www.webelieveinacure.org.
Media Contact
Scott Reich
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SOURCE Believe in a Cure, Inc.
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