Funding Research and Hope in the FoxG1 Community.
About the Aidyn Mae Hope Fund
Meet Aidyn Mae, a 2 ½ year old little girl who suffers from FOXG1 syndrome, an incredibly rare brain disorder with less than 1,000 cases diagnosed globally. The FOXG1 gene is found in the brain and is responsible for creating a vital protein crucial for normal brain development and functionality. The deficiency of this protein has robbed Aidyn of the ability to sit up, crawl, walk, feed herself, or speak. Aidyn’s family has partnered with Believe in A Cure, a nonprofit founded by a fellow FOXG1 parent.
This nonprofit is leading intensive research efforts into a Gene Replacement Therapy (GRT) for FOXG1 syndrome, focusing on providing a new copy of the FOXG1 gene to control the production of the protein and improve the symptoms that take place due to the deficiency. Researchers have made great strides in pre-clinical trials and with the right funding could be at the human clinical-trial stage within the next 2-3 years.
On August 23, 2022, when Aidyn was a mere 6 months old, we received her diagnosis. Aidyn underwent numerous appointments and tests that led up to this day, and while we knew there was “something” wrong, we were left in utter disbelief when we were told there weren’t any available treatments and that the life expectancy for our baby girl was less than ten years.
The last two years have been difficult, and at times, unbearable. From daily therapy appointments to the constant influx of medications, we’re trying to learn what we can do best for our girl. We have both been brought to tears and to our knees begging the Lord for mercy on innumerable occasions. He has been faithful in providing an outpouring of provision and love from our community so that we can continuously take steps toward maximizing the quality of Aidyn’s life.
A Letter from Aidyn’s Parents
Will you join us in hope and action as we look forward to a day where there’s a cure for FOXG1?
*To make a donation via check, please make payment to Believe in a Cure, Inc. with a memo for Aidyn Mae Hope Fund. Mail to: 1051 Port Washington Blvd. #1625, Port Washington, NY 11050Thank You to Our Committee Members & Event Sponsors
Tarik & Melissa Bateh
Leslie Jones
Joe & Morgan Teichert
Erin Jones
Joseph & Aryn Lentz
Gary & Holly Walsh
Jenn Kjellman
Chip & Jen Skinner
Tori Walton
In the News.
Resources
If you or your family are on a similar journey, or you are facing the pain and brokenness of life in any other way, here are some resources the Gottlieb family have found helpful in walking through this season:
Disability and the Gospel: How God Uses Our Brokenness to Display His Grace by Michael S. Beates and Joni Eareckson Tada
Walking with God through Pain and Suffering by Timothy Keller
The Problem of Pain by C.S. Lewis
Prayer in the Night: For Those Who Work or Watch or Weep by Tish Harrison Warren