Susan Sklaroff Van Hook
Cure CMD Lead, CMD Lay Guideline Development
United States of America
Susan Sklaroff-Van Hook is a project support volunteer for the advocacy organization Cure CMD and is currently leading the initiative to develop lay guidelines to best practice care of CMD on behalf of Cure CMD. She also works as a special education parent advocate at a disability rights agency in New Jersey. Her background is eclectic, including careers in both dance and geologic science. Susan’s favorite career is that of mother to Alex, now a college-bound senior in high school. Alex is diagnosed with CMD of unknown subtype and is deaf. Susan’s current work allows her to apply her real-life skills as an educational and medical advocate and to constantly increase her knowledge-base regarding the supports and services necessary in order for children with disabilities to have full access to the educational process.
Organisations
Cure CMD

Cure CMD was established in 2008 with a mission to advance research for treatments and a cure for Congenital Muscular Dystrophy (CMD). Cure CMD works …