BATON ROUGE, LA — Recent breakthroughs in Rett syndrome research with potential implications for reversing other neurological disorders are inspiring Baton Rouge’s second International Rett Syndrome Foundation (IRSF) benefit, the Oct. 27 “Black Out Rett Syndrome” concert in Baton Rouge, hosted by IRSF and national Rett Syndrome spokesperson and country music superstar Clint Black. Black will be joined on-stage with his brothers Brian and Kevin, and nephew Coleton, performing to celebrate the memory of Kevin’s daughter, Cortney Black, who lost her battle to Rett syndrome.
In addition to a performance by Black, the benefit will feature a live auction with funds benefitting IRSF’s Research to Reality Research Fund, chaired by Clint Black. One-hundred percent of net proceeds are earmarked for research.
With momentum growing nationwide for “Black Out Rett Syndrome,” two generous donors—one a grandmother from California, the other the Rachel Ames Rohr Foundation—have created a $300,000 matching gift program for the month of October, now known as “Black Out Rett Syndrome Month.” A powerful statement to the critical need for research funding, the nationwide push is an effort to raise awareness about the more than 200,000 women and children worldwide affected by this condition, and the nearly 100 families affected by Rett in Louisiana.
One such Mandeville resident is 33-year-old Lauren Favaloro, who was diagnosed in 1985 at age five at Johns Hopkins by Dr. Andreas Rett, whom the syndrome is named after. Lauren was one of the first ten children in the United States ever diagnosed with Rett syndrome after her language and mobility skills did not develop normally. As one of the older women in Louisiana affected by Rett syndrome, Lauren’s parents Wes and Linda Favaloro still hope treatments on the horizon will benefit their daughter. “We love Lauren as she is, but the thought of her using her hands, gaining the ability to communicate, or progress in daily living skills would be a dream come true,” says Lauren’s mother, Linda.
“Rett syndrome (RTT) is a genetic neurological disorder that occurs almost exclusively in girls,” Kathryn Schanen Kissam, Baton Rouge, LA, 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.”
According to Kissam, with the discovery of the gene that causes Rett syndrome in 1999 and promising research released just days ago that shows the potential reversibility of RTT abnormalities in brain activity by drug treatments and improvement of neurological functions in mice, the fast pace of innovation in the field of Rett syndrome research and treatment calls for increased efforts. “We must fund crucial new research with the potential to reverse symptoms of Rett syndrome and improve 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.”
“Rett affects one in 10,000 live female births including my daughter, Regan,” said Dawn Conroy of Lafayette, who is also a host for the event. “I believe the current clinical research which we are trying to fund may one day help change Regan’s quality of life. It will also surely mean that one day another family we will never know won’t face the trials of Rett syndrome.”
Click here to purchase tickets to the event. Limited general admission tickets are available for $100 per individual and include the concert and a southwest buffet dinner.