“This generous gift propels Texas Children’s Hospital’s efforts to perform groundbreaking research that is designed to lead to innovative treatment options for the millions of lives affected by neurological disorders,” said Dr. Huda Zoghbi, director, Texas Children’s Neurological Research Institute. “The Enbridge contribution is timelier than ever with nearly 450 million people worldwide affected with neurological diseases, 14 million of whom are America’s youth. This gift will not only lead to advances that will help patients with neurological disorders, but will serve as an investment in the future of our children.”  

The number of people afflicted by neurological disorders such as Rett syndrome, Down syndrome, autism, cerebral palsy, epilepsy and learning disabilities is on the rise.  These diseases are estimated to exceed half a trillion dollars annually in healthcare expenditures, lost productivity and related economic costs.  Brain-related disorders account for the majority of our nation’s long-term care costs and, when combined with psychiatric disorders, account for more hospitalization and prolonged care than almost all other diseases combined.

“Enbridge is committed to supporting key health initiatives in the North American communities where our employees live and work,” said Stephen J.J. Letwin, managing director, Enbridge Energy Company, Inc.  “We are proud to invest in this innovative neurological facility at Texas Children’s Hospital, which is pioneering cutting-edge research and treatment advances that ultimately benefit children worldwide.”

Houston is the headquarters for Enbridge’s worldwide natural gas transportation businesses and for two of Enbridge’s three U.S. publicly traded entities, Enbridge Energy Partners, L.P. and Enbridge Energy Management, L.L.C.

Texas Children’s Hospital, one of the top pediatric organizations in the world, recently announced that it is investing $1.5 billion over a four-year period in initiatives to secure its role as a pre-eminent pediatric institution and to anticipate the future of children’s health regionally, nationally and internationally. This is the largest expansion program ever by a single children’s hospital.

The planned initiatives, all of which are targeted for completion by 2010, focus largely on research and accessibility, two areas which the Texas Children’s board and its leadership believe are the keys to rapidly translating science into quality clinical care for children, as well as making that quality care accessible to all patients. Major projects include the creation of a comprehensive neurological research institute, the formation of a maternity center, expansion of existing research facilities and the development of one of the largest pediatric hospitals in a suburban setting

“This investment is not about buildings; it is about the responsibility we as a leader in pediatrics have to accelerate the translation of research into effective treatments,” said Mark A. Wallace, chief executive officer of Texas Children’s Hospital. “Corporate partners like Enbridge make it possible for us to commit the necessary resources to change the lives of countless children and families, in Houston and throughout the world.”

The Texas Children’s Neurological Research Institute will be the first comprehensive pediatric neurological research center of its kind in the world devoted to collaborative, unified efforts to understand the unique issues of the child’s brain structure, development patterns and related diseases.

The institute will combine research, treatment and education, assisting families with children suffering cognitive disorders and scientists committed to finding treatments and cures. Additionally, because so much of this work will be done using genetic models of neurodevelopmental and neurodigenerative diseases, it is anticipated that findings will have a major impact on adult diseases such as Alzheimer and Parkinson diseases.

About Texas Children’s Hospital:
As one of the nation’s largest pediatric hospitals, Texas Children’s Hospital is renowned for its expertise and breakthrough development in the treatment of cancer, premature infants, cardiogenic disorders, diabetes, asthma, HIV/AIDS and attention-related disorders.   Since opening its doors in 1954, the Texas Children’s Hospital has cared for more than 1 million children from every corner of the world and has had more than 2 million patient encounters a year.  Internationally recognized, the hospital is ranked in the top five among children’s hospitals by both Child and U.S. News and World Report. 
 
About Enbridge Energy Company, Inc
Enbridge Energy Company, Inc., is an indirect wholly owned subsidiary of Enbridge Inc. of Calgary, Alberta and is the general partner of Enbridge Energy Partners, L.P. (www.enbridgepartners.com) (the “Partnership”), which owns and operates a diversified portfolio of crude oil and natural gas transportation systems in the United States. The Partnership’s principal crude oil system is the largest transporter of growing oil production from western Canada. The system’s deliveries to refining centers in the U.S. Midwest account for approximately 12 percent of total U.S. oil imports; while deliveries to Ontario, Canada satisfy approximately 60 percent of refinery demand in that region. The Partnership’s natural gas gathering, treating, processing and transmission assets, which are principally located onshore in the active Mid-Continent and Gulf Coast area, deliver more than 2 billion cubic feet of natural gas daily. Enbridge Energy Management, L.L.C. (www.enbridgemanagement.com) manages the business and affairs of the Partnership and its sole asset is an approximate 14 percent interest in the Partnership. For more about Enbridge in the United States, go to www.enbridgeUS.com.

Grand Rapids Press, Grand Rapids, MI, circulation 133,000

Excerpt

Progress comes slowly for Maiya Novitsky, a 4-year-old with Rett syndrome. Her parents consider just maintaining her current level of ability an accomplishment. But her father, Scott Novitsky, said he is worried Maiya — and other students with severe disabilities — will regress dramatically if she is denied year-round schooling because of a proposed change in state Education Department rules.

"We can see that she’s learning and making gains," Novitsky, of Walker, said. "But if we’re told that she has to take the summer off, they’re going to have to go back and redo everything in the fall. I just don’t know why they would want to do that."

But educators and special education advocates said the proposed change, which would bring the state in line with national standards, should not hinder students who truly benefit from extended time in the classroom.

Article Link

Year-round special education program may end (opens in new window)

Publisher’s Note

This is a good example of how to use a topic that is of current interest to a wider audience to get the word out about Rett Syndrome. The issue in Michigan is that legislators are proposing that a child’s Individual Education Planning (IEP) “committee” be the determining body as to whether a child would receive an extended school year education. Currently that is a mandate in Michigan for all students in special education programs, but legislation would change this. The challenge with this is that it creates a situation whereby the IEP team may end of voting on the issue to reach consensus and the parent usually has just one vote, compared with the school district representatives who form a majority of members on an IEP team. The only recourse if a parent disagrees with the District on any education related issue is to file a costly and lengthy appeal, called a “Fair Hearing”, with an Administrative Law Judge.

Kudos to Scott Novitsky for getting the word out about Rett Syndrome to an audience of 133,00 subscribers and for making the general public aware of this vital educational need.

This is exciting news for the entire Rett Syndrome Community! As members of IRSA and long time supporters of RSRF, we look forward to being of service to this newly combined organization. Here is the press release in its entirety:

News Release:

Monday, June 04, 2007

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.   

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

Source

Petersfield Post  13 May 2007

Petersfield, Hampshire, UK

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.

Source

Detroit Free Press May 6, 2007

Based on feedback provided by Scott Novitsky of Walker, Michigan, USA, father of Maiya (4 RTT).

Excerpt

The increase in autism cases is creating challenges for public schools across metro Detroit that are charged with providing a free education to all children, even if that means they have to treat a disability before a child can learn. Because insurance companies rarely cover costly therapies and programs for children with autism, the schools are often their only source of treatment. And the schools are searching for new approaches to reach them.

While public schools are the main provider of resources and treatment for children with autism, there is no consistency in the availability or quality of programs from one district to the next because Michigan does not mandate what schools should do for these children. In 2005-06, Michigan’s public schools spent $93.5 million on programs just for children with autism. That money is on top of what the schools pay special-education teachers, psychologists, social workers and others who also deal with children with autism.

For parents who are not happy with their local district’s offerings, the only alternative is making their way through a maze of costly programs and medical treatments. Scott Novitsky of Walker considers himself one of the fortunate few. His insurance helps pay the small army of professionals treating his 4-year-old daughter, Maiya. She has Rett syndrome, a severe form of autism. She does not speak, has gastrointestinal problems and has no control of her hands. She suffers from uncontrollable repetitive movements and uses a wheelchair. "The insurance companies wanted to pawn everything off on the school system," Novitsky said. His goal is to keep Maiya from regressing. If she makes gains, that’s even better. "We’re going to just enjoy the time we have with her and keep her happy," he said. "And hopefully the cure will come."