About the Rett Syndrome Research Trust

Monica Coenraads

Chief Executive Officer

Monica Coenraads’s involvement with Rett syndrome began the day her then-two-year-old daughter was diagnosed with the disorder. A year later, in 1999, she co-founded the Rett Syndrome Research Foundation (RSRF) and held the position of scientific director during the eight years of the Foundation’s drive to stimulate scientific interest and research in Rett syndrome, culminating with the groundbreaking work in 2007 which demonstrated the first global reversal of symptoms in preclinical models of the disorder. Monica launched the Rett Syndrome Research Trust in late 2008 to pursue the next steps from that milestone.

As chief executive officer she oversees all aspects of the organization, including day-to-day operations, strategic direction, fundraising, and communications. Together with her colleagues and with input from advisors and the scientific community at large, Monica sets and executes RSRT's research agenda.

In 2010 she co-founded the Rett Syndrome Research Trust UK and served as a trustee for a number of years (the organization is now called Reverse Rett). In 2013 she joined the Advisory Council for The Research Acceleration and Innovation Network (TRAIN) of FasterCures. In 2016 Monica was invited to join the UNC Autism Research Center Advisory Board. She is a founding trustee of the American Brain Coalition. She was awarded Redbook magazine’s Mother & Shaker Award, alongside Katie Couric and Matilda Raffa Cuomo. In 2006, the Howard Hughes Medical Institute highlighted Monica’s efforts in the November issue of the HHMI Bulletin. In 2020 Monica was featured in a New York Times article.

Monica has two honorary doctorate degrees, one from the University of Massachusetts Medical School, received in 2015, and one from the University of Edinburgh, received in 2019.

Under Monica’s leadership at RSRF and RSRT, $117 million has been raised for Rett syndrome.

While at RSRF Monica conceived of the Strollathon program and chaired the first event in Stamford, Conn. The event was subsequently inherited by IRSF after the RSRF/IRSA merger, where it remains a signature event.

Monica was born in Italy and immigrated to the US in her childhood. The family traveled extensively due to her father’s employment and lived in numerous locations both within the US and Europe. Monica has an MBA with an emphasis in international business from the University of Connecticut.

Steven E. Hyman, MD

Director, Stanley Center for Psychiatric Research

Dr. Steven E. Hyman, MD, is Harvard University distinguished service professor of stem cell and regenerative biology and a core institute member of the Broad Institute of Harvard and MIT, where he directs the Stanley Center for Psychiatric Research. The Stanley Center conducts global, large-scale studies of neuropsychiatric genetics and follow-up biological studies involving stem cell biology, neurobiology, and technology development in support of translational efforts to identify biomarkers and promising therapeutic targets.

From 2001 to 2011 Hyman served as provost of Harvard University, the university’s chief academic officer, where he had a special focus on building cross-disciplinary and cross-institutional collaborations in the humanities, sciences, and engineering. From 1996 to 2001, he served as director of the U.S. National Institute of Mental Health (NIMH), where he invested in neuroscience and emerging genomic technologies, and initiated a series of large practical clinical trials to inform practice. He has served as editor of the Annual Review of Neuroscience (2002 to 2016), founding president of the International Neuroethics Society (2008 to 2013), president of the Society for Neuroscience (2015), and president of the American College of Neuropsychopharmacology (2018). He is a fellow of the American Academy of Arts and Sciences, a fellow of the American Association for the Advancement of Science, and a member of the National Academy of Medicine, where he serves as a member of the Forum on Neuroscience and Nervous System Disorders (chaired 2012 to 2018), which brings together industry, government, foundations, patient groups, and academia. Hyman is board chair of the Charles A. Dana Foundation (NY), and a board member of the Charles H. Revson Foundation (NY), the Wyss Center for Bio and Neuroengineering (Geneva, Switzerland), the International Neuroethics Society, and the nonprofit scientific publisher Annual Reviews. In the private sector he is a director of Voyager Therapeutics and of Q-State Biosciences, and serves on the scientific advisory boards of Janssen Pharmaceuticals, Brave Neuroscience, and F-Prime Capital. In 2016, he was awarded the Rhoda and Bernard Sarnat International Prize in Mental Health by the National Academy of Medicine. He received his bachelor of arts degree, summa cum laude, from Yale College, a master's from the University of Cambridge, which he attended as a Mellon fellow studying history and philosophy of science, and an MD, cum laude, from Harvard Medical School.

Heidi Epstein

Vice Chairman

Heidi joined the RSRT board of trustees in 2009 and became vice-chairman in 2012. With business experience acquired as the head of an institutional sales force at a New York investment firm and her natural enthusiasm, Heidi brings determination, leadership, and organizational skills to any endeavor she undertakes. Heidi’s involvement in the world of nonprofits, philanthropy, and community service work began in Tokyo, where she worked as an English-language editor for a large Japanese charity. She and her husband, Jonathan, brought their family back to the United States shortly after their second daughter, Hannah, was born prematurely. Settling in California, Heidi was soon involved within her new community, becoming a member of the board of the Palisades Junior Women’s Group, raising money for local charities, engaging with various community activities, and fundraising for her older daughter’s school.

For little Hannah, Heidi organized a team of therapists to address developmental problems thought to have resulted from her early birth. She researched Hannah’s challenges, put together an intensive intervention program, and coordinated schedules and team meetings with her army of therapists. But shortly after Hannah’s third birthday, the cause of her difficulties was reassessed: She was diagnosed with Rett syndrome. Heidi threw herself into searching for information on the disorder. She found the RSRT website the very day it launched online, and she immediately wanted to be involved. Within weeks, she and Jonathan met with Monica Coenraads to see how they could help.

Heidi began a letter-writing campaign to friends and colleagues, quickly raising $100,000 for research. In 2009, she spearheaded the first Hope for Hannah fundraiser. A few years later she joined forces with Marci and Rudy Valner, and the event became Hope for Hannah & Gaby. Today, the event Heidi launched has expanded to become Reverse Rett LA and is now co-chaired by the Epsteins and three other Rett families, and has a committee of 63 dedicated friends and families. Since Heidi started the event it has raised a remarkable $9.2 million in total for RSRT.

With business connections and friends spanning across the US and abroad, the Epsteins have also co-chaired RSRT events in New York, Boston, and London. Their efforts have resulted in some $15 million in total for Rett syndrome research. Heidi has also been instrumental in engaging large firms to provide pro bono services, including McCann Erickson’s generous support and creation of a PSA for RSRT.

Heidi graduated from UCLA with a degree in English literature. She lives in Los Angeles with Jonathan, a Partner at BentallGreenOak, and their two daughters. The Epsteins are passionate about the goals of RSRT and committed to supporting RSRT’s research agenda.

Marci Valner

Treasurer

Marci became involved with RSRT when her daughter, Gabriela (Gaby), was diagnosed with Rett syndrome in 2010. Gaby was diagnosed with autism around the age of 3, but Marci never felt Gaby fit that diagnosis. For years she researched and met with specialists, both in the United States and abroad, to find answers. Finally, through a blood test, Gaby was diagnosed with Rett syndrome at the age of 17.

Marci immediately began researching Rett syndrome to educate herself and see how she could help raise awareness and money to find a cure. For the first time, the Valner family felt there was hope and something they could do to help Gaby and so many girls suffering from this terrible disorder.

Marci and her husband, Rudy, were introduced to Heidi and Jonathan Epstein through a mutual friend and soon joined forces to chair the Hope for Hannah and Gaby Gala in Los Angeles. Using her past fundraising experience, Marci reached out to her community and network to get most everything donated for the event to keep costs to a minimum. The Los Angeles event has grown to be the most successful Rett fundraiser in the world, raising over $1.3 million in 2018. Danielle and Alex, Gabriela’s sister and brother, co-chair the junior committee for the Los Angeles event and are instrumental in its success. A cure for Rett syndrome is a priority for the Valner family.

Marci received her bachelor of arts from UCLA in political science and her master’s degree in public administration from USC. She worked in banking until her children were born. She then became a stay-at-home mom and played a very active role fundraising for her children’s schools, The Center for Early Education, Harvard Westlake, and University of Pennsylvania. Among her many roles she served as president of the parent association for The Center for Early Education as well as on the board of trustees. In addition to volunteering, after being frustrated by the limited academic options available to Gaby, Marci, along with another mother, started a school for children that focused on inclusion, communicating through typing, and self-development.

From 2010 to 2015 Marci’s career turned to direct sales for Worth New York, a women’s luxury clothing company. Beginning as director of business development for Los Angeles, her region increased sales over 100%. She next became regional director of California, where Marci managed a larger sales force and oversaw growth for the state. Her region reached top sales in the country.

Marci speaks fluent Spanish. Her hobbies are travelling, exercising, bridge, and reading.

About RSRT

Our Staff

Translational Medicine Advisory Board

Board of Trustees

Financials

Take Action