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Press Release

The Rett Syndrome Research Trust Strengthens Research Team with Addition of Robert Deans as Chief Technology Officer

Media Contact
Monica Coenraads
Chief Executive Officer
Rett Syndrome Research Trust
January 16, 2024

The Rett Syndrome Research Trust (RSRT) is excited to announce the addition of Robert Deans, PhD, as Chief Technology Officer, Head of Research. Deans brings a wealth of genetic medicine knowledge and hands-on industry experience to RSRT. Most recently, he served as Chief Technology Officer of BlueRock Therapeutics, where he led the charge on stem cell and gene therapy approaches. Deans previously served as Chief Scientific Officer of Rubius Therapeutics and Executive Vice President at Athersys, where he advanced a number of stem cell therapeutics into late-stage clinical development.

RSRT’s research team now consists of four exceptional leaders in their fields, each with experience, knowledge, and backgrounds that complement and enhance the others. Deans’ colleagues include Randall Carpenter, MD, Chief Medical Officer; Jana von Hehn, PhD, Chief Scientific Officer, Head of Clinical Development; and Monica Coenraads, Chief Executive Officer. Collectively RSRT’s research team has decades of drug development, clinical operations, and business development experience. Their experience and track record are complemented by an unwavering dedication and passion to accelerate the development of genetic medicines that can change the lives of those with Rett syndrome.

“I’m honored to join such a stellar team and to adopt their mission of securing a cure for Rett syndrome as my own,” says Deans. “I will do everything in my power to advance the mission.” Inspired by RSRT’s progress in launching gene therapy for Rett, Deans aims to facilitate the advancement of several additional genetic medicine programs within the next few years. In his new role, he will be responsible for driving various genetic strategies toward the clinic in close collaboration with RSRT-funded investigators, consortia, and companies. His expertise will ensure RSRT-funded curative programs are optimized and partnered to transition from discovery and proof of concept to IND-enabling studies on a path to the clinic.

"The journey from therapeutic concept to approved medicine is a particularly arduous one in the genetic medicine space. Bob has a superb track record of staying the course as evidenced by the recent data from the effort he led at BlueRock showcasing best-in-class therapeutic benefit for Parkinson’s disease. We live in an era of increasing promise for genetic medicines, and Bob joining RSRT’s leadership team inspires strong confidence in me that this promise will be realized as he puts his uniquely enabling skill set to work reversing Rett," shared Fyodor Urnov, PhD, Professor of Molecular Therapeutics, Molecular and Cell Biology Department at the University of California Berkeley and Director of the Innovative Genomics Institute, Danaher Beacon for CRISPR Cures.

Deans holds a BS from the Massachusetts Institute of Technology and a PhD in microbiology from the University of Michigan. He founded and chaired the International Society for Cellular Therapy’s Commercialization Committee and chaired the Science and Technology Committee of the Alliance for Regenerative Medicine.

“With the addition of Bob our research team at RSRT is incredibly strong,” says Monica Coenraads. “Our focus since our inception has always been genetic medicines and with Bob at the helm, we will make faster progress. Both Bob and Randy have business development experience which is becoming increasingly critical as programs mature, while Randy brings deep translational medicine expertise. Industry is clamoring for patient real world data as well as objective tools to accurately measure symptoms. Jana’s foresight in establishing and leading the Rett Syndrome Global Registry, the Ciitizen digital natural history study, our biosensors efforts, as well as our biorepository ensures we will be in a position to provide industry with key data. Our work at RSRT is made possible by the passionate families that fundraise for us and our generous donors. Much work lies ahead, and their support going forward is more important than ever to ensure that we can continue the exciting momentum and eradicate this terrible disorder.”

About Rett Syndrome Research Trust
RSRT is a nonprofit organization with a highly personal and urgent mission: achieving a cure for Rett syndrome and related disorders caused by defects in the MECP2 gene. Since its founding in 2008, RSRT has awarded more funds than any other Rett organization in the world to leading scientists pursuing targeted research on Rett. RSRT funds and spearheads global scientific and clinical activities advancing the most promising curative approaches. To date, every biopharmaceutical company pursuing a cure for Rett syndrome is doing so because they leveraged discoveries and resources incubated with RSRT funding.

About Rett Syndrome
Rett syndrome is a genetic childhood neurological disorder caused by random mutations of the MECP2 gene on the X chromosome. The disorder affects predominantly girls but can rarely also 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.