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As you can see, we are developing an all-new Rett Syndrome web portal aggregating information from our other Rett Syndrome websites, including Rett.tv, RettSyndrome.info, and RettBooks.com. If you have any questions about this site, please send us an email: mail@rett.com Tweet This Post Laura Marie Battistone (November 18, 1984 – April 13, 2009) http://www.bennettfuneralhome.net/index.cfm Laura Marie Battistone, age 24, of Rochester; departed this life suddenly on April 13, 2009 at 1:29 a.m. in Beaumont Hospital, Troy, from complications of Rett Syndrome. She was born November 18, 1984 in Toledo, OH, the loving daughter of Janine Battistone of Rochester, MI [...] Michael J. Astrue, Commissioner of Social Security, announced on October 27, 2008 the national rollout of the agency’s Compassionate Allowances initiative, a way to expedite the processing of disability claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security’s standards. “Getting benefits quickly to people with the most severe [...] Dr. Adrian Bird, Ph.D., renowned MeCP2 researcher and former chairman of the Rett Syndrome Research Foundation (RSRF) scientific advisory board, is now serving as a trustee for the Rett Syndrome Research Trust (RSRT) organization, according to this biographical page on the Wellcome Trust website. In 2007 Dr. Bird and RSRT co-founder Monica Coenraads announced on behalf of RSRF the landmark results of [...] An unexpected four-day hospital stay with one of our girls reminded us of the need for more awareness of Rett syndrome. Doctors and nurses who were totally unfamiliar with Rett syndrome had difficulty understanding the nuances of our child’s condition. As such, her care was compromised and she had to stay much longer than perhaps [...] The first comprehensive analysis from the InterRett database of over 1,200 people with Rett syndrome was undertaken by an international collaboration headed by the Telethon Institute for Child Health Research. The results were published in the March 2008 edition of the international journal Neurology. The InterRett database project is funded by the International Rett Syndrome [...] In a front page story, The Irish Times reported on February 2, 2008 that the State has reversed its position and agreed to pay for a spinal operation in London for a 12-year-old Cork girl with Rett Syndrome who has been on a waiting list for surgery at a Dublin hospital for 10 months. In an [...] The Rett Syndrome Research Trust (RSRT), a relatively new Rett Syndrome research organization, was awarded a €30,000 (approximately $44,181) grant from the charitable arm of the Tax Free World Association (TFWA) in an announcement dated January 25, 2008. TFWA is the world’s largest Duty Free and Travel Retail Association, with a membership of 420 brands, supplying the global [...] The International Rett Syndrome Foundation (IRSF) unveiled its all-new website in late January 2008. The site is located at www.RettSyndrome.org. The new site provides an unprecedented array of online services and supports for the Rett Syndrome Community, including forthcoming Rett Syndrome forums and chat rooms. Over the past few weeks we’ve enjoyed seeing the site progress to [...] We were particularly struck by this inspiring story of Rett syndrome support from Ireland. It illustrates how one family faced the challenges of obtaining costly and timely scoliosis surgery for their daughter who has Rett syndrome. Their child was on a waiting list for surgery at an Irish hospital for more than a year, so [...] |
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