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New Diagnosis
Getting the diagnosis of Rett syndrome is difficult, but there are many people who are willing to help you, beginning with IRSF. Here are a few places to start. Back to School Another summer has passed and some of us are already back in school while others are eagerly awaiting the first day. The beginning of a new year is exciting but can also be stressful for parents and caregivers of children with Rett syndrome while they prepare for a smooth and successful transition. As the mother of a daughter with Rett syndrome and also a former special education and regular education teacher, I wanted to use my experiences to help you get your child’s school year started off on the right track. Regional Representative Program The Regional Rep Program has been established to provide emotional support, information and resources to families affected by Rett syndrome. It has become an integral part of IRSF. The program has greatly expanded over the past year, appointing approximately twenty-five new Regional Reps throughout the country. Living with Rett syndrome Here you'll find information on searching for great caregivers, daily tips and how-to advice, help for the caregiver, and entering adulthood. Health Matters A good night’s sleep promotes learning, improved mood, general good health, and a better quality of life for both your child and the whole family. This article written for the International Rett Syndrome Foundation (IRSF) by Dr Daniel Glaze, Medical Director of the Blue Bird Circle Rett Center and Sleep Disorder expert, reviews the benefits of sleep; the risks involved with disrupted sleep; the types of sleep problems experienced frequently in Rett syndrome; and strategies for getting back on track to good sleep habits. These Frequently Asked Questions are answered! At School and Day Programs The goal in selecting the right educational or day program setting for your child should be to provide her with the most stimulating program in the least restrictive environment, taking into account each child's own special needs and personality. Communication Remember that she has not lost the will to speak and act, just the way to speak and act. Adaptive Equipment and Devices The initial evaluation is very important in determining what kind of equipment to choose. It should be done by your child’s local physician, physical or occupational therapist, or a local medical center, who may consult with vendors (equipment supply stores) to find the right piece of equipment for your daughter. Assistance Programs The cost of health care has skyrocketed to crisis dimensions in recent years, and paying for health care is an additional burden to families of children with special needs. International RTT Associations and Foundations Links to Rett syndrome web sites around the world. Tissue & Organ Donation The advancement of scientific discoveries towards treatments and a cure for Rett syndrome (RTT) depend on the ability of researchers to study how mutations in the MECP2 gene affect growth and development. You can help with this research by donating a sample of your child’s blood or tissue if she is having a routine blood draw or undergoing a medical or surgical procedure (e.g., skin or muscle biopsy, endoscopy, scoliosis surgery). A known MECP2 mutation and completion of a clinical questionnaire is required for this research. |
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