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| Annual Family Conference |
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IRSF carefully and thoughtfully plans an annual conference for families, caregivers, and allied health professionals. It is the only one of its kind where the parents and professionals of those with Rett syndrome and Related Disorders come together from all over the world, under one roof, to learn the most current recommended care and advocacy strategies for every stage of life, and hear first-hand the latest in research and clinical trials. Even though so many resources today can be accessed online, nothing can replace the face-to-face experience of meeting with experts; hands-on interactions with carefully selected Exhibitors; spending time developing lasting relationships with other parents, attendees and all of us at IRSF. In addition to being a critical continuing education opportunity for you, it is also a chance for caregivers to relax, recharge your batteries, and have a little fun. We hold our conference in a different, easily accessible part of the U.S. each year to reduce the travel distances for attendees.
ANNOUNCING: 29th Annual Education and Awareness Conference June 27 – 29, 2013 Zermatt Resort & Spa Midway, Utah Check back late January 2013 for Program Details and Online Registration. Registration Fees will remain approximately $280/per person which includes all sessions and meals, and does not include hotel rooms or transportation to/from the resort. Negotiated room rates and reservation codes will also be posted late January. We look forward to seeing you in beautiful, relaxing Midway, Utah. Just steps away from the world-class resort town of Park City, and a short drive from the international Salt Lake City airport. 
In June 2012, over 500 people from over 20 countries convened in New Orleans to face the future and Chart the Course forward for Rett Syndrome research and care. IRSF was pleased to host this exceptional event with the support of worldwide partners, organizers, sponsors, speakers, and exhibitors. It was quite magical to have such incredible and transformative discussions and debates happening under one roof and at every turn amongst the scientists, researchers, families, and clinicians who care so much about Rett syndrome, MECP2 and CDKL5 disorders. Friendships were made, personal and professional relationships advanced, and the course forward has been fueled thanks to everyone’s concerted efforts. Please visit the World Congress website for materials, Photo Gallery, and recordings.  "Cheers to Research to Reality"May 27 – 30, 2011 Boston, MA IRSF 2011 Rett Syndrome Education and Awareness Conference The 2011 IRSF conference provided families and caregivers with hope, inspiration, and the power of accurate information needed to dare to dream of reversing Rett syndrome in our loved ones; to be empowered to keep her healthy today and how to have endurance along the way. Beyond the actual learning of information, valuable contacts and relationships were made face to face that attendees carried back to their personal and online communities and support networks. Click here to view the 2011 IRSF Conference Program Photo Gallery 2011 Conference Video  IRSF Conference Program Final 2011 125.71 Kb
Featured this past year: Motivational keynote by Massachusett’s own Dick Hoyt of Team Hoyt. Leading Research experts from Boston Children’s, Harvard and MIT, including IGF-1 Clinical Trial Investigator Dr Omar Khwaja. Communication experts Susan Norwell and Judy Lariviere. World-renowned treatment experts and centers such as the Boston Children’s Hospital Rett Center, Baylor College of Medicine Blue Bird Rett Center in Houston, University of Alabama Rett Clinic in Birmingham, and more. Sessions on therapies, education, family foundations, financial and legal life planning and a first-ever track of sessions on the direction of research from leaders who have been with us from the time the syndrome was named, to finding the gene, to reversing symptoms in the lab, to keeping Rett syndrome in the forefront of neuroscience discoveries. Over 300 people joined IRSF over Memorial Day weekend to meet and learn from top Rett syndrome experts at our 27th annual Education and Awareness conference in Boston, MA. Of special interest to attendees this year was the first-ever dedicated session track on research. Especially well received were the early results reported by Omar Khwaja, MD, PhD, director of the Rett Syndrome Program in the Department of Neurology at Children's Hospital Boston, on his newly begun IGF-1 clinical trial. The conference began on Friday afternoon with a private Children’s Hospital Boston lab tour, where many parents for the first time ever toured labs and saw a full 360 degree bench-to-bedside approach to Rett syndrome Basic to Translational and Clinical Research Studies in action. Throughout the rest of the weekend, families and professionals chose from over 40 unique sessions focused on Research, Communication and School, Medical Issues and Therapies, Family Foundations, Fundraising and Advocacy. Also joining us were over 15 interactive Exhibitors, demonstrating products and services of specific interest and benefit to our children living with Rett syndrome. The Tribute Reception was an incredibly special highlight event hosted in the grand historic Imperial Ballroom at the Boston Park Plaza Hotel. The program opened with a unique and lovely Boston cultural Irish Step Dance performance, followed by the annual award ceremony, viewing of the 2011 Tribute video, and an amazing live concert performance featuring Ayme (Sanchez) Loren, singing her hit song “Silent Angels” with guitarist Eduardo Toledo Guimaraes. 2011 AWARD RECIPIENTS  Art of Caring Award recipient Dr Omar Khwaja, Director Rett Syndrome Program, Children’s Hospital Boston Each year at the Tribute Recpetion, IRSF recognizes individuals who have made significant contributions towards IRSF’s mission to advance research for treatments and a cure for Rett syndrome while improving the overall quality of life for those living with Rett syndrome today. The following awards were presented by IRSF’s Board of Directors to:
We hope you enjoyed the 27th Annual IRSF Family Conference. We look forward to seeing you next year as IRSF hosts the World Congress on Rett Syndrome in New Orleans, June 22nd-26th, 2012. The family sessions will be held June 22nd-24th, and the researcher meeting will be June 24th – 26th ! Here are important links and downloads:
If you are seeking additional information from any of our wonderful 2011 Exhibitors, please visit their websites or contact us at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it .
Click here to access complete information including videos from last year's conference.
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