About Team Eliza
Our beautiful, 2-year-old daughter Eliza suffers from FOXG1 Syndrome—a rare, pediatric, neurological disorder that impacts brain development and causes severe developmental disabilities. Eliza’s diagnosis brings with it a number of challenges. To name but a few, low muscle tone in her abdomen makes controlling her body difficult, she struggles with purposeful hand use, and her vision is impaired. Many children with this syndrome never obtain the ability to walk or talk, and suffer from epilepsy, severe feeding difficulties and gastrointestinal distress, and sleep disturbances. What may not be listed in your average symptoms list—but has become exceedingly clear to us as we’ve gotten to know the beautiful person Eliza is and made several friends with the same diagnosis—is these kiddos have a seemingly unbreakable resilience, a staggering ability to learn and to grow despite being dealt extremely difficult cards, and kind and joyful dispositions nothing short of radiant. And these are not hollow accolades or consolations, there is a sort of magic to these kids. It is one of the deepest yearnings of our hearts that one day, Eliza and others with the same diagnosis will no longer have to suffer with the devastating effects of this syndrome. It is impossible to describe the hope with which we were filled in getting acquainted with the FOXG1 Research Foundation and learning that our yearning is not a pipe dream at all, but a nearly-present reality. In the last several years, researchers partnering with the Foundation have made enormous strides in understanding the FOXG1 gene and the disease caused by its dysregulation, and in developing therapies to help those children who suffer from the syndrome. The Foundation is mere years—not decades—away from advancing meaningful treatments to FDA clinical trials, treatments that promise not only to largely eliminate the effects of the disease in future generations, but to have life-changing restorative effects in older individuals currently living with FOXG1 Syndrome. We feel deep gratitude for the tireless work being done to mitigate the impact of this disease for kids like Eliza, which is why we have joined the “Race to a Cure.” We would be immensely grateful for any who wish to partner with us and support this incredible cause.
