Read more about this amazing fundraising effort:

Over $100,000 raised for Jessica’s Boundless Playground planned for Belchertown; $300,000 more needed | masslive.com.

Mid-Michigan Derby Girls event will raise money for Rett Syndrome | – MLive.com.

http://www.RollinForRett.org

We applaud the creativity of this fundraiser, once again proving that any event or activity that has a passionate following can be a springboard for a successful Rett Syndrome fundraising event.

Promising Research Inspires Increased Efforts; American Idol Contestant Sparks Rett Syndrome Awareness

RICHMOND, VA (January 25, 2008) – Recent breakthroughs in Rett syndrome research with potential implications for reversing other neurological disorders are inspiring Richmond’s first-ever International Rett Syndrome Foundation (IRSF) benefit. Also inspiring these efforts are the more than 200,000 women and children worldwide affected by this condition, such as 6-year-old Richmonder Anna Cate Rabke, who visited doctors and therapists all over the country when her language skills never developed to more than 10 words. “After Anna Cate temporarily lost the ability to walk, a genetic test revealed one of our worst nightmares: she had Rett syndrome,” said Anna Cate’s mom, Emilie. “Every day we pray that her regression will not advance.”

“Rett syndrome (RTT) is a genetic neurological disorder that occurs almost exclusively in girls,” Kathryn Schanen Kissam, Richmond, VA, resident and chairman of the board for IRSF commented. “Rett syndrome becomes apparent after six–18 months of early normal development. It results in a regression that leads to lifelong disabilities including loss of speech, purposeful hand use and mobility. It is often misdiagnosed as autism or cerebral palsy.”

Awareness of Rett syndrome recently increased significantly when 26-year-old Chicago native Angela Martin, the mother of a girl with RTT, won her way on American Idol to the round in Hollywood, CA. “It’s not about fame for me, it’s about getting her the best care, the best therapists,” Martin told the camera during an American Idol show, according to a press release issued by IRSF. “The doctors told me my daughter was never going to walk or talk. I’m going to get that for her.”

On February 29th, 2008, the International Rett Syndrome Foundation and several Richmond families with daughters who have Rett syndrome are hosting a Southwest Fest, “Spending Time, Ending Rett Benefit,” at the Virginia Historical Society in Richmond, VA. The benefit features a live auction and a performance by singer and songwriter Kevin Black, brother to Country Music’s 10-time platinum-selling artist, Clint Black. Kevin Black will perform to celebrate the memory of his daughter, Cortney Black, who lost her battle to Rett syndrome. Funds from this event benefit IRSF’s Circle of Angels Research Fund. One-hundred percent of net proceeds are earmarked for research. (Julia Roberts serves as co-chairman of this Research Fund.)

According to Kissam, with the discovery of the gene that causes Rett syndrome in 1999 and promising 2007 research that shows the reversibility of RTT symptoms in mice, the pace of innovation in the field of Rett syndrome research and treatment calls for increased efforts. “We now have an unprecedented and historic opportunity to fund crucial new research with the potential to impact millions of lives and advance the

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understanding of Rett syndrome and many other related disorders. Because Rett syndrome is a classic chromatin disorder, it has become the ‘rosetta stone’ of brain disorders and likely holds the key to unlock treatments and cures for other related disorders including autism, schizophrenia and some forms of mental retardation.”

In December 2007, the breakthrough research funded by IRSF which showed the reversibility of Rett syndrome in genetic mouse models was selected as one of the top five most important scientific breakthrough of the year by WIRED magazine. “Increased funding for research could lead to treatments not only for Rett syndrome but for other neurologically based disorders as well,” Kissam added. “We are confident that this infusion of resources will help accelerate the translation of basic research discoveries to clinical applications, with tangible benefits for individuals struggling with Rett syndrome.”

“Somewhere in the world, every five hours a child is born with Rett syndrome. RTT affects one in 10,000–15,000 live female births including my daughter, Mary Grace,” said Hamilton Holloway, parent and owner of Bear Creek Coffee in Richmond, a sponsor of the event. “I believe the increased funding for much-needed research may one day help change Mary Grace’s future. It will also surely mean that one day another family we will never know won’t face the trials of Rett syndrome.”

The International Rett Syndrome Foundation is the largest and most comprehensive not-for-profit organization for parents, scientists, interested professionals and others concerned with Rett syndrome. The mission of IRSF is to support and encourage medical research to find a cure and treatments for RTT, to increase public awareness, and to provide information and emotional support to families of children with RTT. In 2007, Kissam led the merger of the International Rett Syndrome Association and Rett Syndrome Research Foundation, resulting in the creation of IRSF. She became involved in the late 1990’s in honor of her sister, Carolyn Schanen, MD, PhD, whose work to help discover the gene that causes Rett Syndrome and care of patients with this condition inspired Kathryn to work collaboratively on seeking cures and treatments.

To purchase tickets to the “Spending Time, Ending Rett Benefit” or to support IRSF, please call (804)741-3687 or visit www.rettsyndrome.org. Tickets are $150 per couple or $75 per individual and include hors d’oeuvres, cocktails and a southwest dinner.

Contact:
Kathryn Schanen Kissam, IRSF Chairman (804) 741-3687 or (804) 519-6231 (cell)

Kathryn@denovocomm.com

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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…

“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.

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.

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

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.   

3rd Annual Cape Cod Strollathon

Date

Saturday, June 2, 2007

Location

South Yarmouth, Massachusetts, USA

Starts at Laurence MacArthur Elementary School

1175 Route 28, South Yarmouth.

Event Timetable

Registration begins at 8:45 a.m.

Strollathon begins at 10:00 a.m.

More Information

Contact Jennifer Endres at 508-394-3011 or capecodstrollathon@yahoo.com

Press Coverage

Rett Syndrome breakthrough just what the doctor ordered

http://www.townonline.com/barnstable/homepage/x301605418