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.
Archive for category Support
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
Greetings! It has been a while since some of you have heard from us. I want to wish you all the very best this holiday season.
I have been personally a bit under the weather for the past several weeks, but I am getting much better now. Special thanks to all of you who offered your emails and prayers for my recovery. I am feeling much better now.
Being physically ill for an extended period of time reminded me of the tremendous responsibility of family caregivers of people with Rett Syndrome. For parents, bothers, or sisters out there who are interested, I wanted to pass along this link to the National Family Caregivers Association. Their website offers a great deal of care giving resources of interest. I had the pleasure of speaking with the founder of this organization several years ago at the World Congress on Disabilities and one of the key themes to the organization’s success is “connecting caregivers”. Here is their website link:
Here’s a story from the September 18th Oprah TV show that we thought might be of interest to the Rett Syndrome Community. Model, television personality and actress Jenny McCarthy, mother of a son named Evan who has Autism has a new book called Louder Than Words.
She was there to promote her new book and to share her story about the techniques she has learned that have helped her son and her cope with the challenges of Autism. She was joined by friend and actress Holly Robinson Peete, also a mother of a son with Autism.
There was much discussion after the show online, but I found one particular viewer comment quite thought provoking. It was from a man with Asperger’s/High Functioning Autism. He has two son’s with Asperger’s. He indicated that every time Jenny and Holly insisted that their sons were “normal” children trapped behind Autism that bothered him. He was by far in the minority of those who posted there opinions after the show. Most people were grateful and thankful for all that Jenny and Holly had to say. In this man’s case, he was grateful and thankful for the opportunity to say this to them and what we call the “Oprah Community”:
“I am a normal Autistic and all I want is to be valued for who I am not be viewed as disordered. The medical community saw a list of common characteristics in a group of people decided it was a disorder and slapped a label on it. That doesn’t make it a diagnosis it makes it a value judgment. People with Autism aren’t disordered they simply have more work to do than the rest of you and by working with them more is required of you as well. Don’t grieve your less than perfect child or your less than perfect life. Instead celebrate the gift of each moment and walk the path of opportunity your child’s life with bring. Don’t think of your child in terms of what they don’t do or don’t give you that you think they should. Challenge your own perceptions about who you think your child ought to be before you harm your child because of your own subjectivity.”
Like I said, it was quite thought provoking. If you’d care to share your comments on the subject, we’d like to hear them. Just click on the comments link below.
As always we appreciate your continued support and encouragement at Rett Syndrome Magazine.
Greg