Trumbull, CT (PRWEB) November 03, 2011
The Rett Syndrome Research Trust is pleased to announce a campaign to boost awareness of Rett Syndrome in the most iconic of all advertising venues – Times Square in New York City. A newly created public service announcement will run an average of nine times an hour for three months starting November 1st on the colossal 6000 square foot Mediamesh display at the corner of 42nd Street and 8th Avenue. An estimated 1.5 million people are expected to view the PSA daily.
Rett Syndrome strikes little girls almost exclusively, with first symptoms usually appearing before the age of 18 months. These children lose speech, motor control and functional hand use, and many suffer from seizures, orthopedic and severe digestive problems, breathing and other autonomic impairments. Most live into adulthood and require total, round-the-clock care. Rett Syndrome is caused by mutations in a gene called MECP2.
The Rett Syndrome Research Trust is the premier organization devoted exclusively to promoting international research on Rett Syndrome and related MECP2 disorders.
While Rett Syndrome has become a high-profile disorder in scientific circles, it is still fairly unknown in the lay and medical communities; thousands of girls and women remain un- or misdiagnosed. We welcome this unique opportunity to help raise the profile of this disease, which has been dramatically reversed in pre-clinical models.
“I am so thankful to Bill Koenigsberg, CEO and Founder of Horizon Media, who secured this spectacular advertising real estate; Garage Media, owner of the Port Authority Display; A2AMedia, who manages the screen, for giving us the opportunity to showcase our disorder; and Jon Denny, film and TV producer, for creating our PSA. When smart, talented, generous people come together for a good cause, amazing things can happen,” said Monica Coenraads, Executive Director of RSRT and parent of a teenaged daughter severely disabled by Rett Syndrome.
“We are thrilled to help RSRT get out their message for such a worthy cause,” said Bill Koenigsberg.
About the 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. Our goal is clear: to heal children and adults who will otherwise suffer from this disorder for the rest of their lives. With our experience and tight focus, RSRT has an unparalleled knowledge base and extensive networking abilities in the world of high-level research. This puts RSRT in a unique position to stimulate, evaluate, support and monitor ambitious and novel scientific projects. To learn more about the Trust, please visit http://www.ReverseRett.org
Source: PRWEB
Tuesday, November 8, 2011
A Mid-Michigan Family Shares Their Experience With Rett Syndrome
Source: WLNS.com
Note: Click on the title to read the full news.
Note: Click on the title to read the full news.
Families Raise Awareness About Rett Syndrome
By DAN MANNARINO Staff reporter
12:23 a.m. EDT, October 16, 2011
NEW YORK (PIX11)—
Imagine you have thoughts, hopes, and dreams but no way to actually express them. It's a rare disorder called Rett Syndrome that affects young girls. Worldwide, 20 girls are born every day with the disorder.
Dr. Sasha Djukic says the disorder doesn't begin right at birth. "Imagine you have a child who is 1 year old, happy and healthy, and then the disease starts, in a matter of a few months it drops the ability to speak, use her hands, walk," says Djukic.
Abby Diamond is now a beautiful, 8-year-old girl. At age 3, she was diagnosed with Rett Syndrome and stopped walking and communicating with her family.
The problem is, not many people know about the disease, so not many people donate money to research.
So today, under perfectly blue skies, families gathered on the steps of the Tweed Courthouse in Lower Manhattan and in other locations around the globe to raise awareness about Rett Syndrome.
"Climbing steps is a symbolic gesture, bringing you upward and forward," says Djurik.
In an inspiring sight to watch, the girls slowly but surely climbed the 30 steps. Joining them were members of the New York City Fire Department who, in some cases, carried these brave girls to the top.
"The girls are good girls, pure in nature, friendly and trapped inside these bodies," says Abby's father, Erick Diamond.
12:23 a.m. EDT, October 16, 2011
NEW YORK (PIX11)—
Imagine you have thoughts, hopes, and dreams but no way to actually express them. It's a rare disorder called Rett Syndrome that affects young girls. Worldwide, 20 girls are born every day with the disorder.
Dr. Sasha Djukic says the disorder doesn't begin right at birth. "Imagine you have a child who is 1 year old, happy and healthy, and then the disease starts, in a matter of a few months it drops the ability to speak, use her hands, walk," says Djukic.
Abby Diamond is now a beautiful, 8-year-old girl. At age 3, she was diagnosed with Rett Syndrome and stopped walking and communicating with her family.
The problem is, not many people know about the disease, so not many people donate money to research.
So today, under perfectly blue skies, families gathered on the steps of the Tweed Courthouse in Lower Manhattan and in other locations around the globe to raise awareness about Rett Syndrome.
"Climbing steps is a symbolic gesture, bringing you upward and forward," says Djurik.
In an inspiring sight to watch, the girls slowly but surely climbed the 30 steps. Joining them were members of the New York City Fire Department who, in some cases, carried these brave girls to the top.
"The girls are good girls, pure in nature, friendly and trapped inside these bodies," says Abby's father, Erick Diamond.
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