Documentary Production and Distribution News
Award-Winning Documentary on Rett Syndrome Holds D.C. Premiere
By StudentFilmmakers.com
posted Jul 2, 2013, 15:52
Panel discussion with Institute of Medicine President, Leading Rett Scientist, Filmmaker and Disease Advocate.
Rett Syndrome, a woman’s disease most women have never heard of, will
be the focus of a documentary film screening and panel discussion. The award-winning
film RETT: THERE IS HOPE, which showcases the struggles of families living with
Rett Syndrome, an autism spectrum disorder that strikes toddler girls, will
hold its Washington, D.C. premiere July 9th at 5:30 p.m. at the National Academies’
Keck Center, 500 Fifth St. N.W. Members of the public are invited to attend
the free screening, reception and panel discussion held with support from the
Institute of Medicine (IOM), an independent, nonprofit organization that provides
unbiased and authoritative advice to decision makers and the public about the
nation’s most pressing health and health care questions.
RETT tells the story of three families living with the syndrome and captures
the spectrum of emotions ranging from the ever-present stress to the love, devotion,
and determination displayed by the affected children, their families, and the
scientists working on a cure. Onset of Rett Syndrome is heralded by loss of
speech and motor control, including functional hand use. Many children suffer
from seizures, anxiety, and severe autonomic, orthopedic, breathing and digestive
problems. Most live into adulthood and require total, round-the-clock care.
The panel discussion following the screening will address the impact of rare
disease research on the broader community as well as NIH and industry translational
efforts. “The long-standing assumption that severe childhood neurological
disorders are beyond repair is collapsing, and Rett Syndrome research is a major
driver of this new perspective. Families all around the globe who love a child
with Rett Syndrome are encouraged and inspired by the current state of research.
Our girls are waiting for a cure – time is of the essence,” said
Coenraads. Panel discussants will feature:
-President of the Institute of Medicine, Dr. Harvey V. Fineberg
-Institute of Medicine member and RSRT Advisor, Dr. Huda Zoghbi, who identified
the genetic cause of Rett Syndrome in 1999 after a 16-year search
-RSRT Executive Director and parent of a teenage daughter with Rett, Monica
Coenraads
-President of REM Entertainment, filmmaker Jason Rem
“It is quite fitting that this film centers on the girls and their families
as the scientific community continues to learn tremendously from the patients.
Rett Syndrome has played an immense role in my research since the mid 1980’s.
It’s been gratifying to witness and be a part of the growing research
momentum. I am optimistic that we will be able to dramatically improve the lives
of girls and women who each day battle the effects of this debilitating disorder,”
shares Zoghbi.
The documentary was made with an all-volunteer effort led by award-winning
filmmaker Jason Rem. “Our goal here is to educate D.C. individuals as
well as media who can effect change on this debilitating disease. Through the
panel discussion, we hope to highlight the issues and brilliant science that
is leading to breakthroughs. It is vital that the public at large learns about
and appreciates the importance of Rett Syndrome and the science which could
lead to a cure,” said Rem.
A reception for attendees will commence at 5:30 p.m.; the screening which starts
at 6:30 p.m. will be followed by a panel discussion and Q & A at 7:30 p.m.
To RSVP online please visit http://www.rsrt.org/screening.
To RSVP by phone or email or for more information please connect with the press
contacts below.
To purchase a DVD and watch the trailer please visit: http://www.rsrt.org/rett-and-mecp2-disorders/thereishope/.
Resources:
www.rsrt.org
www.rementonline.com
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