TRUMBULL, Conn., March 13, 2025 (GLOBE NEWSWIRE) — The Rett Syndrome Research Trust (RSRT), the organization working to cure Rett syndrome, is pleased to announce that Amy Gilliland, President of General Dynamics Information Technology (GDIT), has joined its Board of Trustees. Amy’s daughter, Ashley, who was diagnosed with Rett syndrome in 2015, is the inspiration behind her drive to help find a cure for the 350,000 children and adults living with this devastating neurological disorder worldwide.
“I’m thrilled to join the Board of Trustees and get even closer to the Reverse Rett mission,” says Amy Gilliland. “As a parent of a child living with Rett syndrome—like so many others leading and advising the RSRT— I share their dedication and urgency to find a cure. RSRT is an organization that delivers results. I am confident Rett syndrome can be eradicated, and I am excited to support the research that will get us there.”
Amy brings significant experience in strategy, business growth, and leadership. As president of GDIT she oversees an $8.7 billion global technology enterprise. Gilliland has more than 25 years of public sector experience including nearly two decades in leadership positions at General Dynamics and service in the U.S. Navy.
Amy has a longstanding commitment to RSRT and contributing to advance Rett research. Since 2018, she has spearheaded Reverse Rett DC, an annual fundraising and awareness event that has raised over $2 million for RSRT research.
“We’re so fortunate to have Amy joining our Board,” says Monica Coenraads, RSRT’s Founder and Chief Executive Officer. “Her business acumen, leadership skills, and wide-ranging experience, along with her remarkable dedication to our cause will be invaluable to the Board and to RSRT. I know for Amy advancing Rett research is a family affair. Her husband, John, and son, Patrick, and youngest daughter, Elizabeth are as passionate as she is about our mission and I thank them, too, for their roles in Reverse Rett DC, and their commitment to Ashley and all with Rett syndrome.”
About Rett Syndrome
Rett Syndrome is a genetic childhood neurological disorder caused by random mutations of the MECP2 gene on the X chromosome. It predominantly affects girls but can rarely also affect boys. Its symptoms typically become apparent between the ages of 12 to 18 months. Rett syndrome is devastating as it deprives young children of speech, hand use, and normal movement often including the ability to walk. As the children enter childhood the disorder brings anxiety, seizures, tremors, breathing difficulties, and severe gastrointestinal issues. While their bodies suffer, it is believed that their cognitive abilities remain largely intact. Although most children survive to adulthood, they require total round-the-clock care.
About the Rett Syndrome Research Trust
The Rett Syndrome Research Trust, a non-profit organization, began in 2008 at Rett parent Monica Coenraads’ kitchen table. RSRT was founded on three simple but powerful truths: children and adults with Rett syndrome are suffering and we must be their voices and their advocates; Rett syndrome is, remarkably, reversible in mouse models of the disorder; and, with continued research progress and sufficient funding, science holds the potential to translate that reversal in mice to a reversal in people.
RSRT, which is the only organization exclusively focused on advancing genetic-based cures for Rett, is the largest funder of Rett research worldwide, with almost $110 million raised since its founding. Multiple clinical trials in gene therapy for Rett syndrome are now underway, all possible because of RSRT-funded research. In 2024 RSRT launched a $40 million initiative, Roadmap to Cures, with a goal to bring three genetic medicines, beyond the current gene therapies, to clinical trials by 2028. RSRT’s mission is clear, urgent, and personal: to cure Rett syndrome and transform the lives of the people we love. To learn more, please visit www.reverserett.org. Follow us on Facebook, Instagram and YouTube.
Contact:
Amanda Breeding
Scient PR
[email protected]
A photo accompanying this announcement is available at https://www.globenewswire.com/NewsRoom/AttachmentNg/992d3595-12a0-4c09-8762-7e28bd061583