Special thanks on behalf of families of individuals with MECP2 Duplication Syndrome to my colleagues Fred Orelove and Donna Gilles who have decided to assign 100% of the royalties of our forthcoming book, Educating Children with Severe and Multiple Disabilities to support research efforts to find new and better treatments. Royalties will be paid to the MECP2 Duplication Syndrome Fund at the Rett Syndrome Research Trust.
Fred and Donna have been leaders in the field of developmental disabilities for decades. Continue reading
This is an old picture of my daughter Ananta from December 1972. June 30th this year marks her 45th birthday. When I took this picture, I didn’t know she only had 10 days left in her short life.
Ananta was diagnosed with Type 1A Glycogen Storage Disease, not MECP2 Duplication Syndrome like her brother Dave, but I think part of her story belongs here. Continue reading
As strange as it may seem rare chromosomal disorders are quite common.
Sunday, June 7th, starts Chromosome Disorder Awareness Week. Unique is an international organization that raises awareness of chromosome disorders and their Awareness week kicks off 7 June 2015. For more information, check out their press release.