Congratulations to the Rett Syndrome Research Trust UK on this recognition in just its 18th month of operation!
Beyond Analysis announces its charity of the year for 2012 | Beyond Analysis.
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Dr. Adrian Bird, Ph.D., renowned MeCP2 researcher and former chairman of the Rett Syndrome Research Foundation (RSRF) scientific advisory board, is now serving as a trustee for the Rett Syndrome Research Trust (RSRT) organization, according to this biographical page on the Wellcome Trust website.
In 2007 Dr. Bird and RSRT co-founder Monica Coenraads announced on behalf of RSRF the landmark results of a study where symptoms of Rett syndrome were reversed in a genetic mouse model. After the 2007 merger of RSRF with the International Rett Syndrome Association (IRSA) Coenraads left the newly created International Rett Syndrome Foundation to form the Rett Syndrome Research Trust organization.
RSRT has a new website under development at www.RSRT.org, along with a separate site exclusively for Rett syndrome researchers at www.RTTScienceWatch.org.
Rett Syndrome Research Trust receives donation from duty free and travel retail association charity
Feb 1
The Rett Syndrome Research Trust (RSRT), a relatively new Rett Syndrome research organization, was awarded a €30,000 (approximately $44,181) grant from the charitable arm of the Tax Free World Association (TFWA) in an announcement dated January 25, 2008.
TFWA is the world’s largest Duty Free and Travel Retail Association, with a membership of 420 brands, supplying the global duty free and travel retail markets. The organization’s charitable arm, TFWA Care, provides financial assistance to humanitarian organizations and various charitable projects.
Here is how the RSRT was described in the TFWA Care announcement: “Based in New Jersey, the Rett Syndrome Research Trust conducts research into treatments and ultimately a cure for Rett Syndrome and related disorders. Rett Syndrome is considered the most physically disabling of the autism spectrum disorders and the leading genetic cause of severe impairment in girls. This neurological disorder robs afflicted girls of speech, hand use and normal movement. It may prove however to be the first reversible childhood neurological disorder.”
Monica Coenraads, the Executive Director of the Rett Syndrome Research Trust, was formerly with the Rett Syndrome Research Foundation (RSRF), which is now the International Rett Syndrome Foundation.
This article provides more information about Monica and the Rett Syndrome Research Trust. Here is how RSRT was described in its first fundraiser announcement in October 2007: “The Rett Syndrome Research Trust will be structured as a highly focused, agile and dynamic research organization, aggressively pursuing the goal of bringing a novel treatment strategy to clinical trials within five years. “Rett Syndrome strikes little girls at random, creating what was thought to be irrevocable neurological damage,” says Monica Coenraads, Executive Director of the Trust. “Our mission is to close the gap between the recent scientific breakthrough demonstrating reversibility in mice, and the establishment of this work to human application.”
While the RSRT web site is not yet functional, we were able to find this contact information for RSRT.
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Monica Coenraads, Executive Director 121 Avenue of Two Rivers |
Congratulations to the Rett Syndrome Research Trust. We look forward to hearing more about this organization’s future research plans and will keep you posted as we learn more.
The International Rett Syndrome Foundation (IRSF) unveiled its all-new website in late January 2008. The site is located at www.RettSyndrome.org. The new site provides an unprecedented array of online services and supports for the Rett Syndrome Community, including forthcoming Rett Syndrome forums and chat rooms. Over the past few weeks we’ve enjoyed seeing the site progress to its launch.
Kudos to the IRSF and their website design and development organization SongSwift Web Media Solutions (www.SongSwift.com) for such a major move forward in providing online support and information to the Rett Syndrome community!
Greg and Janine
Rett Merger: It’s Official
Jun 27
Here is the official news. We pledge our full assistance to this newly formed organization and look forward to great things for the Rett Syndrome Community and we look forward to hearing more from IRSF about their plans.
OFFICIAL PRESS RELEASE:
FOR IMMEDIATE RELEASE
June 27, 2007
CONTACT: Chuck Curley
781-762-2240
781-301-1718
International Rett Syndrome Association and Rett Syndrome Research Foundation Complete Merger Combined Operations of Leading Rett Syndrome Organizations Will Lead to Enhanced Research, Treatment and Advocacy Programs
(Cincinnati, Ohio June 27, 2007) – The International Rett Syndrome Association (IRSA) and the Rett Syndrome Research Foundation (RSRF), the world’s two leading Rett syndrome organizations, announced today that all approvals necessary to effectuate their merger had been obtained. The merger, approved unanimously by both boards of directors and by over 99% of the voting members, will be effective on June 30, 2007. The combined entity, known as The International Rett Syndrome Foundation (IRSF), will continue to focus on research, family services and advocacy related to the treatment and cure of Rett syndrome.
Today marks the beginning of a new era in the search for cures and treatments of Rett syndrome and related disorders, said Kathryn Kissam, Chairman of the board of IRSF. =B3A unified Rett syndrome community is better prepared to help advance the science and serve the families affected by Rett syndrome.
Chuck Curley will be the Executive Director of IRSF. The combined entity will build upon the success of both organizations, said Curley. We look forward to expanded cutting-edge research programs and innovative family services. I am hopeful that together we can accelerate treatments and cures while advocating for needs of affected individuals and families.
About Rett Syndrome
Rett syndrome is a neurological disorder which predominately impacts girls. While there are nearly 4,000 known cases of Rett syndrome in the United States, the disorder is genetically linked to more widespread neurological disorders such as autism, mental retardation and schizophrenia. Rett Symptoms begin to manifest between the first six to eighteen months of life and eventually incapacitates the affected children so that they cannot survive without constant care. The disorder causes seizures, respiratory and gastrointestinal abnormalities, and a variety of muscular and motor impairments.
About IRSA
The International Rett Syndrome Association (IRSA), founded in 1984, is the world’s oldest and most comprehensive non-profit organization dedicated to providing thorough and accurate information about Rett syndrome, offering informational and educational family support, and stimulating research aimed at finding the cause of Rett syndrome and methods for its prevention, control and cure. The Association has members in all 50 states and 72 foreign countries. For more information please visit www.rettsyndrome.org, or call 1-800-818-RETT.
About RSRF
The Rett Syndrome Research Foundation was founded in late 1999 by a passionate group of parents who were committed to funding research aimed at finding treatments and a cure for Rett syndrome. Today RSRF is the world’s leading private funder of Rett research. In the last five years RSRF has funded 104 projects at premiere institutions totaling over $11 million. The foundation has proven to be fiscally responsible by directing 97% of each dollar donated directly to program services and was awarded Charity Navigator’s prestigious 4-Star rating. For more information please visit www.rsrf.org, or call 1-513-874-3020.
June 28, 2007 is the night of the big fundraising event of the year for the Rett Syndrome Research Foundation and this year marks its 5th year in New York City. Rett Syndrome fundraisers all over the world can learn a great deal about successful event fundraising from how this event is staged and promoted. The event is conducted at a premier location, honoring a well-regarded individual, and is conducted by an outstanding Benefit Committee.
The event is a reception and auction held at the famed Sotheby’s auction house, featuring live entertainment, fantastic food and an incredible silent and live auction.
RSRF’s honoree for this event is Mr. Ric Clark, President and CEO of Brookfield Properties. Brookfield Properties is an office property corporation that owns, develops, and operates premier assets in the downtown core of high-growth North American cities. Brookfield Properties’ buildings define the skylines in many major metropolises including New York, Boston, Washington, D.C., Los Angeles, Houston, Toronto, and Calgary.
For more information about this event, please visit the Rett Syndrome Research Foundation website at RSRF.org.