Archive for category Fundraising

Climb for Hope: An amazing Rett Syndrome story

Can you imagine risking your own life to raise Rett Syndrome awareness? Over 16 years ago a team of very brave people did just that with the financial assistance of the Canadian Rett Syndrome Association.

In 1991 a Canadian climbing team launched the first Mount Everest climbing expedition for charity, the Climb for Hope. The team was formed by Mr. Ernie Sniedzins to bring attention to the rare medical condition Rett Syndrome, which his daughter has. The Climb for Hope team consisted of climbers from most Canadian provinces. Peter Austen, as leader, and his team overcame many obstacles on their pilgrimage to Everest including lack of money, landslides, and terrible weather to name a few.

Their pre-Everest preparations included dangerous ascents of Mount Communism in the former Soviet Union and Popcatepetl in Mexico. Each of these climbs was a prelude to the real adventure. Everest or, as the Nepali people call it, the Goddess Mother of the World, remained unconquered in 1991 by several international teams. Three climbers reached 26,000 feet but were beaten back by 100 mph jet stream winds. They were lucky to return alive.

I was inspired to learn more about the Climb for Hope via a listing on eBay for a Mount Everest Expedition Coat:

“You are looking at a very rare piece of history. This coat was used on the Climb For Hope Expedition in 1991 by team member Bob Gibson. If you look on the inside of the coat, you’ll find his name badge sewn into it. The coat is in perfect condition and his been hanging in a closest for several years now. I’m in the process of moving and wanted to clean a few things out. “

I also found two other  interesting items about this remarkable event at Amazon.com.

Film: Everest: Climb for Hope.  Awarded the gold medal for Best Informational Documentary at the New York International Film Festival.

Book: Everest Canada: The Climb for Hope. Written by Dr. Peter Austen, the leader of the event.

Thanks to awareness-building efforts such as this remarkable adventure, much progress has been made since 1991 in the quest for a cure for Rett Syndrome.  Still, this story of the team’s struggles to reach the summit illustrates just how challenging and sometimes heartbreaking the efforts to find an eventual cure for Rett Syndrome continue to be.

Glimpses from the Seattle Strollathon for Rett Syndrome research

The recent Strollathon in Seattle raised a reported $15,000 for Rett Syndrome Research. We thought you would enjoy seeing a glimpse of that event through first time participants. Lauren and Adam Cramer raised $1,800! Kudos to all event organizers and participants.

If you have news from your Rett Event that you’d like to share, please drop us a note.

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Rett Fundraising: Pig Party Raises Funds for Rett Syndrome research

Source

The Nashville Tennessean, Nashville, TN, 04 July 2007, Tennessean.com

Publisher’s Note

Kudos to the Poulton family on a great fundraising effort. Having lived in Nashville, Tennessee in the 1990s, I can attest to the generosity and determination of residents in that part of the United States. This is outstanding evidence that even a family organized event can make a profoundly positive difference.

The original article and photos were carried by the largest newspaper in Middle Tennessee, thereby adding significantly to the awareness of Rett Syndrome. Back in 1997 doctors at Nashville’s Vanderbilt University Hospital who examined my daughter thoroughly had never heard of Rett Syndrome. 

GOODLETTSVILLE, TN, USA — More than 80 friends and neighbors attended the 10th annual Poulton Pig Party, held by the Poulton family of Goodlettsville. The annual party, on June 9, took on new meaning this year as the family took up donations for Rett Syndrome research, a rare neurodevelopmental disorder that affects the Poultons’ granddaughter. “Our fundraising effort raised about $1,100,” Brent Poulton said. “The weather was great, and the pig did his part.” Read More…

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.

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.

 

 

 

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