GEMSS: Genetics Educational Materials for School Success is a website that provides educational materials for school personnel to support the inclusion of students with genetic syndromes in the classroom. They have recently added a useful section on MECP2 duplication syndrome.
The site also includes a sections on many other genetic conditions, such as Rett syndrome and Angelman syndrome.
Regardless of the school placement of your child, this can be very helpful information to share with your child’s school.
This year, I am working with my co-editors (Fred Orelove & Donna Gilles) on the 5th edition of Educating Children with Severe and Multiple Disabilities. Our first edition came out in 1987 and the book has been used to train about 50,000 teachers and other professionals over the years. The publisher, Brookes Publishing Co., has agreed that my share of the royalties will be paid directly to the MECP2 Duplication Syndrome Fund at the Rett Syndrome Research Trust. It won’t be a lot, but it will provide a few extra dollars in the coming years.
More importantly, there is another reason Continue reading
Dave (front row, Centre) and friends
Connections, a newsletter published by the Alberta Association for Community Living, an organization that promotes inclusion for people with developmental disabilities published a recent article on inclusion at the College and University Level in its Spring 2010issue that just came out. We were delighted to see our son Dave (who was diagnosed with MECP2 Duplication Syndrome last year) featured in the story that includes the photo reproduced here taken at Concordia University College of Alberta. Continue reading