The health of a 27-year-old with Rett syndrome deteriorated rapidly in the months after an August 2010 attack at a respite centre by a serial offender. A neurologist’s report had characterized the effects of the assault on the young woman as post traumatic stress disorder:
Neil Genzlinger, whose daughter Abby has Rett syndrome, is an American playwright, editor, book reviewer, and theatre and television critic. He writes for The New York Times, where he’s a copy editor. His reviews sometimes include his unique perspective on Rett syndrome. Here’s his latest:
This article illustrates how a local television news story provided significant momentum for concert ticket sales that were initially slow:
HOUSTON (June 19, 2007) – Texas Children’s Hospital today announced a $500,000 donation from Enbridge Energy Company, Inc. to benefit the Texas Children’s Neurological Research Institute, the world’s first dedicated pediatric neurological research facility.
“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.
Source
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.
Publisher’s note:
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
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Rett Syndrome News Release For Immediate Release Contact: Kathryn Kissam International Rett Syndrome Association and Rett Syndrome Research New Organization to Focus on Research, Family Support, Awareness and Cincinnati, Ohio – The International Rett Syndrome Association (IRSA) and “The rapid increase in scientific knowledge and pace of innovation in the “Both RSRF and IRSA have made significant contributions to the advancement The merger, which has been unanimously approved by both organizations’ “I applaud the members of the governing boards of IRSA and RSRF for their The core mission of IRSF will be to fund research for treatments and a cure Chuck Curley, the executive director of RSRF, will be the future executive “Continuing research to find a cure and treatments for Rett syndrome is The IRSF board of directors will be formed with six people chosen by IRSA’s IRSF’s executive offices will be located at the RSRF location in Cincinnati, About Rett Syndrome About IRSA About RSRF |