The Rett Syndrome Research Trust (RSRT) is excited to announce a significant expansion of its research team, accelerating the organization's mission to find cures for Rett syndrome, a devastating neurological genetic disorder caused by mutations in the MECP2 gene. The new team members bring expertise that complements the prodigious knowledge and experience of RSRT's existing internal science staff—Robert Deans, PhD, Randall Carpenter, MD, and Jana Von Hehn, PhD.
TRUMBULL, Conn., Sept. 30, 2025 /PRNewswire-PRWeb/ -- The Rett Syndrome Research Trust (RSRT) is excited to announce a significant expansion of its research team, accelerating the organization's mission to find cures for Rett syndrome, a devastating neurological genetic disorder caused by mutations in the MECP2 gene. The new team members bring expertise that complements the prodigious knowledge and experience of RSRT's existing internal science staff—Robert Deans, PhD, Randall Carpenter, MD, and Jana Von Hehn, PhD.
John Sinnamon, PhD, has joined as Associate Director of Preclinical Research. Sinnamon first connected with RSRT founder and CEO, Monica Coenraads, when he was a postdoctoral researcher at Oregon Health & Science University (OHSU) in 2014. At OHSU, Sinnamon was part of a team developing RNA editing technology in the lab of Gail Mandel, PhD. Sinnamon was first author on a trio of papers that put RNA editing on the map as a potential therapeutic strategy for Rett syndrome. He was a member of RSRT's Gene Therapy Consortium and MECP2 Consortium. These consortia, conceived of and funded by RSRT, were designed to facilitate collaboration and data sharing across labs and disciplines. Data generated from these efforts led to the Rett syndrome programs currently being advanced by Neurogene, Taysha Gene Therapies and Vico Therapeutics. Following his work in the Mandel lab, Sinnamon led a research team at Pfizer focused on RNA therapeutics and gene editing. His background in editing, deep knowledge of the Rett literature, and hands-on experience working with Rett pre-clinical models will be of tremendous value to RSRT and the academic labs and biopharmaceutical companies advancing genetic medicine programs.
"Working on Rett and being part of the RSRT community early in my career gave me a passion for rare disease," says Sinnamon. "Nothing is ever going to be fast enough when your child is ill, but there's been tremendous progress on Rett syndrome in the last 25 years. I'm motivated by the opportunity to change the course of life for this community."
RSRT has also retained David Backer as Strategic Advisor for Chemistry, Manufacturing, and Quality Control (CMC). Backer is the former CEO of Curate Biosciences and is the founder of DB Biologics, which provides strategy and CMC support for Cell and Gene therapy companies. He is an industry leader in manufacturing practices for gene therapy, and his pro bono role at RSRT will be crucial for advancing potential Rett medicines to clinical trials. Backer, like RSRT's CEO Monica Coenraads and most of RSRT's 14-member Board of Trustees, is deeply personally connected to the cause. His 25-year-old daughter, Kate, has Rett syndrome.
Assisting the research team is Han Zhang, PhD, a post-doctoral fellow in the lab of Erik Sontheimer, PhD, at the University of Massachusetts Chan Medical School, who has taken on the role of project manager for the RSRT-funded MECP2 Editing Consortium. Combining her experience in genome editing and her superb organizational skills Zhang coordinates across the multi-institutional programs and with RSRT's partners in the Rare Disease Translational Center at Jackson Labs.
Also bringing their expertise to RSRT's efforts are Nathan Manley, PhD, and Christina Fuentes, PhD of Dark Horse Consulting. As a leading consulting firm in the gene therapy space, Dark Horse provides valuable CMC, regulatory, and strategic guidance to RSRT. Rounding out our team is Robert Counihan, JD, a partner of the law firm, Fenwick. Counihan has been retained to provide pro bono legal guidance based on his expertise in intellectual property and patent law in the life science sector. Counihan is also personally connected to Rett syndrome as his sister suffers from the disorder.
"Curing a neurological disease is an ambitious and challenging goal. One that takes more than drug development experience. It takes passion, commitment, tenacity and unrelenting focus. The RSRT team has all that in spades. That's what makes RSRT special," says Coenraads.
About Rett Syndrome
Rett syndrome is a rare genetic neurodevelopmental disorder caused by random mutations in the MECP2 gene on the X chromosome. The disorder predominantly affects girls but can also rarely affect boys. Symptoms typically become apparent between the ages of 12 to 18 months. Rett syndrome is devastating as it deprives toddlers of speech, hand use, and normal movement often including the ability to walk. As childhood progresses 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 Rett Syndrome Research Trust
The Rett Syndrome Research Trust is the only non-profit organization exclusively focused on advancing genetic medicines for Rett syndrome. It 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.
Media Contact
Monica Coenraads, Rett Syndrome Research Trust, 1 2032435733, [email protected], https://reverserett.org/
SOURCE Rett Syndrome Research Trust
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