Archive for June, 2007

Rett Merger: It’s Official

Here is the official news. We pledge our full assistance to this newly formed organization and look forward to great things for the Rett Syndrome Community and we look forward to hearing more from IRSF about their plans.

OFFICIAL PRESS RELEASE:

FOR IMMEDIATE RELEASE

June 27, 2007

CONTACT: Chuck Curley

781-762-2240

781-301-1718

International Rett Syndrome Association and Rett Syndrome Research Foundation Complete Merger Combined Operations of Leading Rett Syndrome Organizations Will Lead to Enhanced Research, Treatment and Advocacy Programs

(Cincinnati, Ohio June 27, 2007) – The International Rett Syndrome Association (IRSA) and the Rett Syndrome Research Foundation (RSRF), the world’s two leading Rett syndrome organizations, announced today that all approvals necessary to effectuate their merger had been obtained. The merger, approved unanimously by both boards of directors and by over 99% of the voting members, will be effective on June 30, 2007. The combined entity, known as The International Rett Syndrome Foundation (IRSF), will continue to focus on research, family services and advocacy related to the treatment and cure of Rett syndrome.

Today marks the beginning of a new era in the search for cures and treatments of Rett syndrome and related disorders, said Kathryn Kissam, Chairman of the board of IRSF. =B3A unified Rett syndrome community is better prepared to help advance the science and serve the families affected by Rett syndrome.

Chuck Curley will be the Executive Director of IRSF. The combined entity will build upon the success of both organizations, said Curley. We look forward to expanded cutting-edge research programs and innovative family services. I am hopeful that together we can accelerate treatments and cures while advocating for needs of affected individuals and families.

About Rett Syndrome

Rett syndrome is a neurological disorder which predominately impacts girls. While there are nearly 4,000 known cases of Rett syndrome in the United States, the disorder is genetically linked to more widespread neurological disorders such as autism, mental retardation and schizophrenia. Rett Symptoms begin to manifest between the first six to eighteen months of life and eventually incapacitates the affected children so that they cannot survive without constant care. The disorder causes seizures, respiratory and gastrointestinal abnormalities, and a variety of muscular and motor impairments.

About IRSA

The International Rett Syndrome Association (IRSA), founded in 1984, is the world’s oldest and most comprehensive non-profit organization dedicated to providing thorough and accurate information about Rett syndrome, offering informational and educational family support, and stimulating research aimed at finding the cause of Rett syndrome and methods for its prevention, control and cure. The Association has members in all 50 states and 72 foreign countries. For more information please visit www.rettsyndrome.orgor call 1-800-818-RETT.

About RSRF

The Rett Syndrome Research Foundation was founded in late 1999 by a passionate group of parents who were committed to funding research aimed at finding treatments and a cure for Rett syndrome. Today RSRF is the world’s leading private funder of Rett research. In the last five years RSRF has funded 104 projects at premiere institutions totaling over $11 million. The foundation has proven to be fiscally responsible by directing 97% of each dollar donated directly to program services and was awarded Charity Navigator’s prestigious 4-Star rating. For more information please visit www.rsrf.org, or call 1-513-874-3020.

Rett Press: Major Donation to Benefit Texas Children’s Neurological Research Institute

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.

An Alternative to Embryonic Stem Cells: Stem Cells From Baby Teeth

Once again the subject of embryonic stem cell research is making the political news. Recently we told you about a new company called BioEden, that cryogenically preserves baby teeth for stem cell therapies. Like many parents of young children with Rett Syndrome we sent away for more information about this company. I was surprised to learn that this service was prompted by research performed nearly four years ago by Dr. Songtao Shi, a pediatric dentist from the U.S. National Institute of Health who discovered that baby teeth grow robustly in a lab setting.

According to the very informative free twelve page brochure that BioEden sent us (that also includes information about pricing and timing for delivery of tooth specimens), the stem cells harvested from baby teeth will have enough therapeutic potential to meet a host of future therapeutic medical needs. Quite frankly, I was surprised at how little this service costs, relative to the potential benefits to those with Rett Syndrome. This seems like a very promising service.  

One thing that struck me is that you have 48 hours after the tooth is out to get the tooth to BioEden to maximize the chances of what they call “a successful isolation”. Adding to the urgency is that not all teeth hold the same potential. Incisors and cuspids are the key teeth that seem to have the greatest potential.

The brochure is definitely worthwhile for you to further consider whether this might make sense for your child’s situation. Here is the link to BioEden’s website in case you missed the original post on this exciting new service: Click here to learn more about this medical breakthrough and how you can take steps now to protect your family’s future health.

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Rett Syndrome Video Channel Reaches the 40 Video Mark

Rett Syndrome Video Channel (www.rett.tv), a service of Rett Syndrome Magazine, added its 40th video today, further serving the Rett Syndrome Community with additional insight into this disorder.

Included in the latest additions are videos showing children from a variety of countries worldwide, showing that Rett Syndrome is a disorder that knows no boundaries and affects each person differently.

Rett.tv provides the Rett Syndrome Community an unprecedented opportunity to view a variety of people with this disorder. The site allows people to share their ideas for therapies and other treatment programs.  It also allows treating physicians and other professionals that see only one or two clients with the disorder to learn more about the disorder.

One unexpected benefit of Rett.tv is the ability for parents and caregivers to upload videos to allow treating physicians who are long distances away to view what is happening with their patients. This feature allows a physician to learn much more about a patient than can easily be described via a telephone call.

A unique feature of Rett.tv is the ability for viewers to add their own videos to share with the Rett Syndrome Community. This process is easy to follow from the button on the home page. We thank those who have already contributed to Rett.tv and we look forward to including even more videos in the future.

The Rett Syndrome Video Channel is available via links from Rett Syndrome Magazine (www.rettsyndrome.info) or directly at www.rett.tv. For more information about Rett.tv, please visit the website at www.rett.tv or email any additional questions to mail@rettsyndrome.info

Rett Alert: St. Louis thieves steal van and wheelchair of girl with Rett Syndrome. Both were later recovered.

Publisher’s Note

This wheelchair has been found as of June 11, 2007.

Follow Up Story

There is some good news for a south St. Louis family whose van was stolen with their daughter’s special wheelchair inside. FOX 2 News has just learned the van was recovered and the wheelchair. Melissa Berry’s 6-year-old daughter Victoria has a neurological condition called “Rett Syndrome”. She can’t talk she can’t walk she can’t use her hands and had a special wheelchair with restraints to keep her safe while riding in a car. Police have located the family’s van and the wheelchair.


Sources


KSDK TV, Fox 2 News, St. Louis, MO, USA


Original Story Summary


It was a double-blow for a south St. Louis family as thieves struck their street Saturday night. They took a van belonging to Steve Clark and Melissa Berry. It was parked in front of the family’s home in the 7800 block of Minnesota Avenue. They also took their six-year-old daughter’s wheelchair, which was stashed in the back. The $10,000 wheelchair was made specifically for Victoria Berry, who has Rett Syndrome, a neurodevelopmental disorder. To Victoria and her family, it’s worth much more.

The problems started with an accident last Friday. Berry was driving when a dump truck hit her van. Her family was fine, but her van was totaled. So Wednesday, she purchased a replacement van — a green 2000 Dodge Caravan. But her string of bad luck wasn’t over yet. “I came home (Saturday) night and my van was gone. It was stolen from right in front of my house. The family does have insurance, but it only covered part of the wheelchair when it was initially purchased. If you have any information on the theft, call St. Louis police at 314-444-5555.

Website Story Link (opens in new window)

Rett Events: RSRF 2007 New York Picture a Cure Benefit

Sothebys_052407June 28, 2007 is the night of the big fundraising event of the year for the Rett Syndrome Research Foundation and this year marks its 5th year in New York City. Rett Syndrome fundraisers all over the world can learn a great deal about successful event fundraising from how this event is staged and promoted. The event is conducted at a premier location, honoring a well-regarded individual, and is conducted by an outstanding Benefit Committee. 

The event is a reception and auction held at the famed Sotheby’s auction house, featuring live entertainment, fantastic food and an incredible silent and live auction.

RSRF’s honoree for this event is Mr. Ric Clark, President and CEO of Brookfield Properties. Brookfield Properties is an office property corporation that owns, develops, and operates premier assets in the downtown core of high-growth North American cities. Brookfield Properties’ buildings define the skylines in many major metropolises including New York, Boston, Washington, D.C., Los Angeles, Houston, Toronto, and Calgary.

For more information about this event, please visit the Rett Syndrome Research Foundation website at RSRF.org.