Archive for May, 2007

Who visits Rett.com?

Our goal with Rett.com is to create an online “meeting place” for the worldwide Rett Syndrome Community. The community response so far has been well beyond our expectations. We have already received visits, comments, and suggestions from a host of people who are related in some way to those with Rett Syndrome. This includes:

  • parents
  • sisters
  • brothers
  • grandparents
  • aunts
  • uncles
  • cousins
  • friends
  • physicians
  • researchers
  • nurses
  • home health aides
  • teachers
  • therapists
  • educators
  • social workers
  • politicians

….and more

We are eager to hear from you about how we can be of further service. Make sure you bookmark this site and check back on our progress. Thank you for your continued support of Rett.com. We will always strive to earn your trust and respect.

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What is Rett Syndrome?

Rett Syndrome is a severe neurological disease that is the most physically disabling of the autism spectrum disorders. Caused by mutations in the gene MECP2, Rett Syndrome affects primarily girls, striking at random in early childhood and destroying speech, normal movement and functional hand use. Many with Rett Syndrome become wheelchair bound; those who walk display an abnormal, stiff-legged gait. Disordered breathing patterns, tremors, and seizures are common.

For a more detailed description of Rett Syndrome, please visit the Rettpedia section of Rett Syndrome Magazine.

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Rett Events: 3rd Annual West Michigan Rett Syndrome Research Golf Tournament

Date

Sunday, June 10, 2007

Location

The Meadows Golf Club, Grand Valley State University, Allendale, Michigan

This "must play" in Grand Rapids has played host to several NCAA events and you can see why. A "beautiful course that is well maintained" the "links-style" layout boasts a "wonderful rotation of holes" that have "a little bit of everything".

Charities Supported

Link: Rett Syndrome Research Foundation

Tournament Sponsors

  • The Huge Show, Nationally syndicated weekday sports talk show — pro, major college, hot topics.
  • Brann’s Steakhouse Grille, featuring “the best food in the world” at seven Western Michigan locations, along with Brann’s Catering, and Brann’s Wedding & Conference Center. Brann’s has recently opened 2 new locations in Eastern Michigan. Sports bar atmosphere featuring steak, Mexican, and seafood.
  • Benshaw Advance Controls & Drives, the world leader in the design, development and manufacture of mission critical motor controls and drives.
  • Phase III Graphics, providing fine print and graphic design services for businesses throughout Michigan. They’ve built their business with old fashioned values… providing quality service at reasonable prices.

Summary

This event is to raise public awareness of Rett Syndrome and to raise much needed funds for Rett Syndrome Research. The Tournamnent is a four-person scramble event followed by a dinner celebration.

Tournament Details

Link: Rett Michigan Golf Tournament Brochure

Schedule of Events

  • 11:30 AM – Registration
  • 1:00 PM – Shotgun Start
  • 4:30 PM – Social Hour
  • 5:45 PM – Dinner, Awards, Prizes

Event Cost

Golf and Dinner Celebration Package (Includes golf, cart, practice balls, dinner, and door prizes)

  • Single: $85
  • Foursome: $430

Dinner Celebration and door prize entry only: $35

Entry Deadline

All tournament and dinner entries must be in by June 4, 2007

Event Contacts

Scott Novitsky

(616) 821–6706

E-Mail Contact

Rett Press: New Rett Syndrome fundraising idea? Tats for Rett

Wishful Inking May Be a World Record

Source

Cleveland Plain Dealer

17 May 2007

Article Summary

Willoughby, OH, USA

After 42 hours, 26 minutes and 4 seconds of tattooing, Marshall Olsen and Adam Kemp declared triumph. The friends decided they had broken the record for the world’s longest tattoo session, according to Guinness World Records. They collected donations, so far about $900, for the American Cancer Society and the International Rett Syndrome Association.  "We just wanted to do something to get ourselves recognized, as well as do something for the community," said shop owner Aaron Eisenberg, 27. "Everyone at some point has been affected, indirectly or directly, by cancer." The American Cancer Society knew of no similar fund-raisers, in Ohio anyway.

Publisher’s Note

This article from Cleveland lifted our spirits and reminded us there are many ways to raise funds for the most worthy cause of supporting those with Rett Syndrome. This is not your typical fundraising event. As with any fundraiser, however, the benefits often extend far beyond the actual money raised. The uniqueness of this fundraiser managed to catch the attention of an editor at one of America’s top 20 newspapers, thereby bringing significant attention to Rett Syndrome. Now if we can only get these guys an invitation to a late night talk show this may really be a success from a publicity standpoint.

Note that while the article mentions that one of the recipients they raised funds for is IRSA, the author did not include any comment from an IRSA representative. This illustrates the need to keep the organization you are supporting apprised of your efforts so they can be prepared to comment to the press when opportunities such as this arise.

Rett Syndrome Magazine plans to include a new Rett Fundraisers section to highlight  Rett Syndrome fundraising successes, big and small, from throughout the world. Our goal is to enable others in the worldwide Rett Syndrome Community to learn and apply the same ideas in their individual communities.

Please submit the basic information about your fundraising efforts and successes at our Contact page and we will get back to you for more details. Thanks for your continued support in making Rett Syndrome Magazine the fastest growing Rett Syndrome resource on the planet.   

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

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

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:

U.S. Senate Link

U.S. Congress Link

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

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