November 11, 2010
One year ago, filmmaker Jason Rem attended an elegant charity event in Los Angeles, at the home of Ann and Jim Gianopulos, held to raise funds for the work of the Rett Syndrome Research Trust. That evening Rem was exposed for the first time to images of the heartbreaking devastation caused by Rett Syndrome, a childhood neurological disorder he had never heard of before. The event, Hope for Hannah, featured the story of Hannah Epstein, a once active and loquacious toddler whose abilities to control her body and to speak disappeared as her parents searched desperately for a reason and for some way to help her.
Rem, who had recently completed a film on the harsh realities in Uganda, was moved by the suffering of both the victims of Rett Syndrome and their families. “I spoke with families and learned about the science. Their strength led me to see if I could get a volunteer group together to create a short five minute film to increase awareness and help the cause,” he said. The five minutes quickly expanded to a feature-length documentary that has just been released: RETT.
Intrigued by both the disease and the research, Rem persuaded industry friends to donate their time and effort for everything from pulling together film crews on both coasts in the US and another in the UK, to the creation of original music and post production services.
Rem traveled to Houston, Texas, to interview Huda Zoghbi, who identified the gene which, when mutated, causes not only the severe symptoms that leave children with Rett Syndrome severely handicapped, but has been implicated in other disorders as well, ranging from cases of autism to childhood schizophrenia.
In Houston he also visited the lab of Monica Justice, whose innovative high-risk research aimed at finding genes that counteract the damaging cascade of Rett symptoms is already bearing fruit. He flew to Edinburgh, Scotland to talk with Adrian Bird, the scientist who has successfully reversed Rett Syndrome in mature pre-clinical models.
Spending time with three families who live with Rett Syndrome, Rem documents its brutal impact on not only the children but their parents. His camera captures constant stress, as well as the love, devotion and determination the disorder elicits from families. In Los Angeles he visits the home of Jonathan and Heidi Epstein, whose story of their daughter Hannah introduced him to Rett.
Heidi remarks, “I once heard someone say of children with Rett Syndrome, ‘The lights are on, and somebody’s home, but they can’t get out.’ This documentary really illuminates what it is to live with that every day.”
In Connecticut he spends time with Monica Coenraads, Executive Director of the Rett Syndrome Research Trust. We meet her daughter, Chelsea, and hear what brothers Alex and Tyler, and their father Pieter, feel about Chelsea’s life with Rett Syndrome.
“I was amazed and gratified by Jason’s drive and initiative to make the predicament of our children visible to more people, and to show the dramatic scientific advances and challenges associated with Rett,” says Monica. “We wish him great luck with the film.”
In England, Rem takes us through intimate moments with the family of Lord Christopher Wellesley as they cope with a surgical procedure on tiny, doll-like Skye, to implant a feeding tube. Musing on the unrelenting nature of Skye’s difficulties, her father speaks for many Rett parents in describing his changed perspective: “You can walk home from work after having had a pretty bad day and realize it’s nothing in comparison to what she has to go through on a day-to-day basis.”
”I was motivated to raise awareness of this complex and relatively unknown disorder. I was touched both emotionally and intellectually. The balance in the film between family and science is a reflection of that. All involved hope the film will assist fundraising efforts and help the search for a cure,” said Rem.
The film will be available for purchase on DVD in December.
About Rett Syndrome Research Trust
The Rett Syndrome Research Trust 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. reverserett.org
About REM Entertainment
RETT is produced by REM Entertainment, which is managed by veteran producer and director, Jason Rem. Rem has produced, directed and written more than 1,000 interview and sports biography programs for ESPN and Fox Sports. For the past ten years, he has produced programming at the biggest sporting events in the world including four Super Bowls and the Olympics and produced, directed and written programming for Sony, Nike, the WNBA, AOL, Red Bull Energy Drink, Vans Shoes, G-Shock Watches and Bisou Bisou fashions. rementonline.com
RETT: The Documentary
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