Virginia Families and Richmond, VA Resident/Chairman of the International Rett Syndrome Foundation Host Fundraiser Featuring Singer/Songwriter Kevin Black

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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