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Rett: There Is Hope

The story behind Rett Syndrome is complicated. It involves a devastating genetic affliction that starts with young girls and includes incredible family dynamics, compassionate care and cutting-edge science. A film focusing on the little known affliction called Rett Syndrome has completed production. RETT, a documentary produced by REM Entertainment will be featured in international film festivals and television. The film focuses on three girls with Rett Syndrome and their families, the Rett Syndrome Research Trust’s (RSRT) pursuit to find a cure and the optimism surrounding treatments and forward thinking scientific breakthroughs.

Filmmaker Jason Rem was inspired to make the film after learning about the disease and those involved. “I spoke with families and learned about the science. Their strength and the lack of awareness led me to see if I could get a volunteer group together to create a short five minute film to help the cause,” said Rem. The volunteer effort expanded and the short film evolved into a fifty-three minute movie. Filming and interviews took place in Los Angeles, Trumbull (CT), Houston, Edinburgh and London. Molecular animation was donated by Howard Hughes Medical Institute, travel provided by ProTravel International and many other individuals and groups added support including editor Dave Cole and composer Gavin Keese.

The documentary follows three families whose daughters are afflicted by Rett. The Coenraads family lives in Trumbull, Connecticut. Monica and Pieter’s fourteen year old daughter Chelsea was diagnosed when she was two. Chelsea is severely afflicted and in experiencing the painful process of finding a diagnosis for her daughter, mother Monica was driven to start the Rett Syndrome Research Trust (RSRT) and serves as its Executive Director. Said Mrs. Coenraads, “In the realm of science, Rett Syndrome is a high profile disorder. But for the general public and even to many clinicians it remains unknown. Jason Rem’s interest and generous spirit, making this touching film on his own time and persuading his colleagues to donate their talents to the project, will surely help to bridge the disparity between Rett’s visibility in research circles and relative obscurity to all those who have never met a child with Rett Syndrome.”

The Epstein family in Pacific Palisades, California has two daughters. Their youngest daughter Hannah is five and was diagnosed with Rett Syndrome two years ago. The family has undergone a dramatic transformation in learning to care for Hannah and shared that experience with Rem. Outside of London lives Lord Christopher Wellesley and his family. He and his wife Emma have three children. Skye, their middle child has Rett and since then the family has been focused on her care and the search for a cure. The family is followed the evening and day of Skye’s surgical procedure to insert a feeding tube.

The documentary also highlights three scientists in Edinburgh, Scotland and Houston, Texas who are working in conjunction with RSRT and other organizations to search for therapies and cures. Huda Zoghbi, M.D. examined her first patient with Rett Syndrome in the mid 1980’s and was so emotionally and intellectually hooked that she spent sixteen years searching and finally discovering the gene mutations that cause Rett Syndrome. In a laboratory at the University of Edinburgh, Adrian Bird, Ph.D and his associates have proven that the symptoms of Rett Syndrome can be reversed in a mouse model of the disease. These and other Rett scientific pursuits in search of a cure have excited the medical community.

While Rett Syndrome is tragic, the breakthroughs like Adrian Bird’s reversal experiments are stunning. Equally compelling is the emotion surrounding the families as they care for their daughters. It is the race for a cure combined with the family passion that sets the tone for RETT. Said Lawrence Mattis, Trustee for RSRT and founder of Circle of Confusion, “The power of Jason’s film is that it captures both the mundane but devastating daily drama of caring for girls afflicted with Rett and MECP2 disorders, and also the incredible hope that the current science offers for these girls. As explained in the film, Rett and MECP2 disorders are not neurodegenerative. The neurons in these girls’ brains are healthy and waiting to be restored. If the cutting edge research is supported and focused, there is every reason to believe that effective clinical treatments will be available for the three young girls who “Rett” profiles and the tens of thousands of other girls and women waiting to be released from the prison of Rett.”

A five minute trailer for RETT can be viewed here:


REM Entertainment is managed by producer, director and writer Jason Rem. The company focuses on film and television entertainment, live event production and business consulting. REM Entertainment has produced programming for ESPN, Fox Sports, Sony, Nike, Red Bull, Vans, the International Medical Corps, Fashion Week, Universal Pictures and the Rett Syndrome Research Trust.

The marketing and distribution efforts for RETT are lead by Linda Taylor, RSRT Professional Advisory Council Member. Throughout her fifteen year entertainment career, Linda has served as a bridge connector for those in need and those who can help. In addition, Linda plays a key role in developing new business opportunities for REM Entertainment‘s core business of film production.



The Rett Syndrome Research Trust (RSRT) is the premier organization devoted exclusively to promoting international research on Rett Syndrome and related MECP2 disorders. The goal is clear: to heal children and adults who will otherwise suffer from this disorder for the rest of their lives. With experience and tight focus, RSRT has an unparalleled knowledge base and extensive networking abilities in the world of high level research. RSRT is in a unique position to stimulate, evaluate, support and monitor ambitious and novel scientific projects.

Rett Syndrome Research Trust is assisted by dedicated volunteer Advisory Council Member Linda Taylor. Linda is an international top model, philanthropist, activist, humanitarian and environmentalist who studied Physics at the University of Bucharest. She is leveraging her global resources to build a community of concerned advocates in helping raise funds to find a cure and reverse Rett Syndrome. ”I promise you now that I will not stop until we reverse this syndrome” said Linda. Her passion and commitment are welcomed by RSRT.

Rett Syndrome Featured on ABC’s The View

The Rett Syndrome Research Trust’s (RSRT) Founder and Executive Director Monica Coenraads  featured on ABC morning program The View,  January 28th 2011. The popular show, hosted by Barbara Walters, Whoopi Goldberg, Joy Behar, Elisabeth Hasselbeck and Sherri Shepherd is highlighting Rett Syndrome because a camerman on the program’s daughter has the syndrome.

The View airs weekdays 11a/10a pt/c on ABC and features top guests such as Jane Seymour and President Barack Obama.

 The View cameraman Manny and his wife, appeared on the show along with Monica.
RSRT Executive Director Monica Coenraads, was invited on The View to explain Rett Syndrome and discuss how people can learn more and help fund the science that is working towards reversing Rett. Monica’s 14 year old daughter Chelsea was diagnosed at 3 with Rett and after Chelsea’s diagnosis, Monica was driven to launch RSRT.
 ( Rett Syndrome Research Trust )
The topic of the show was a departure from the usual light tone of  The View. However, the producers felt the topic and Manny’s plight was important enough to make an exception.
Each audience member of the program received a copy of the RETT: There Is Hope DVD. The film was also utilized by the hosts for research purposes prior to the taping.


 RETT: THERE IS HOPE. Picture This Film Festival

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