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Archive for category Advocacy

Rett Press: Rett Syndrome Advocate and Fundraiser Lands UK Television Hosting Contract

May 13

Posted by Greg Long in Advocacy, Celebrities, Media Coverage, Spokespersons | No Comments

Background

Coleen McLoughlin is the fiancée of Manchester United and England Football (soccer) star Wayne Rooney. The media interest in Rooney has enabled Coleen to become a celebrity in her own right. She regularly appears in the English tabloids.

In 2004, Coleen officially launched the countdown to the national Jeans for Genes Day. Her little sister Rosie has Rett Syndrome and the Rett Syndrome Association UK is one of the benefiting charities of Jeans for Genes Day.

Article Summary

Coleen McLoughlin has been signed as a presenter for ITV in an exclusive two-year deal.
The fiancee of Manchester United and England footballer Wayne Rooney is to host a number of day time and peak time programmes for ITV1 and ITV2 between now and 2009. Her first project is an ITV2 series made by television company Initial. Coleen’s Real Women will see her on a mission to find naturally beautiful women for genuine high profile modelling assignments

Source

Petersfield Post  13 May 2007

Petersfield, Hampshire, UK


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Rett Press: Girl with Rett Syndrome Denied A Public Education

May 12

Posted by Greg Long in Advocacy, Education, Legal Issues, Media Coverage | No Comments

Source

Chicago Daily Herald, May 12, 2007

Editor and Publisher’s Note

As two people who have met Lindsey and spent time with this fine young woman, this news saddens us greatly. Our prayers go out to Lindsey and the entire Ross family. In addition to being great parents, the Ross’s are strong and spirited leaders in the Rett Syndrome Community in Illinois and Internationally.

Diane and Mick Ross deserve our praise and kudos for making such a valiant effort and costly investment to make a difference in Lindsey’s life and those throughout the Rett Syndrome Community. This Federal court ruling is a major step back for people with Rett Syndrome who seek simply to learn, express themselves, and make friends among their peers. In our opinion Lindsey Ross deserves better consideration and we urge Federal lawmakers to act immediately to change the laws to correct injustices such as this.their hands. It also slows growth of the head and often causes seizures. However, Ross also has been evaluated as having “average or close to average” intelligence.

What do you think about this story?

This would be a good time to send an email with a link to this story and your comments to your U.S. Senator and Congressional Representative:

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We’d like to hear your thoughts about this story. Please post them by clicking on the comments link below.

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Rett Advocate: Juli Wilson Marshall: 1959 – 2007

May 5

Posted by Greg Long in Advocacy | No Comments

Chicago lawyer who represented a child with Rett Syndrome for free drowns during a triathlon fund raiser for the Leukemia and Lymphoma Society

Source

Chicago Tribune on line edition, May 5, 2007

Summary

Mrs. Marshall, of Lake Forest, died Wednesday, May 2, of what medical professionals said was an accidental drowning. Competing in a triathlon Sunday in St. Petersburg, Fla., she was found in the water during the 0.93 mile swim, local officials said. Mrs. Marshall, 48, was rushed to a nearby medical center where she later died. Mrs. Marshall entered the race through Team in Training, a program that raises money for the Leukemia and Lymphoma Society, something that made sense to those who knew her.

"I think it was her passion for life, the way she cared about anybody who was underprivileged," said Robin Hulshizer, a close friend and colleague. "One of the things that troubled her most was that there were kids that weren’t in the position of privilege that her children had."

Those children included Lindsey Ross, a northwest suburban high school student suffering from Rett Syndrome, a rare neurological disorder. Mrs. Marshall read an article about Lindsey, who was fighting over her civil and educational right to stay in high school with other students, and called the girl’s mother, Diane Ross. She asked if she could represent Lindsey in court, for free.

"I was blown away by the fact that a complete stranger wanted not only to help Lindsey, but in such a big way and with such a big heart," said Diane Ross of the ongoing case. "She was so passionate about wanting to be Lindsey’s voice in court."

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U.S. Congressman pushes for national clearinghouse on autism

Apr 18

Posted by Greg Long in Advocacy, Autism - General, Media Coverage, Politics | No Comments

Summary

The Pittsburgh Post-Gazette reported today that on April 17, 2007 U.S. Rep. Mike Doyle introduced a bill that would provide $350 million to improve services for people with autism, creating a national "clearinghouse" for research and information on treatments.

The newspaper quoted Mr. Doyle as saying that "a long-term goal is finding a cure for autism spectrum disorder, a group of developmental disabilities — including Asperger’s syndrome and Rett syndrome."  He went on to say "but in the interim, the government needs to help families gain access to treatments that help manage the illness. They know that with love and support, individuals with autism can flourish. he government has consistently failed to provide them with the services they need."

Story Link

http://www.post-gazette.com/pg/07108/778784-84.stm

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