WHO ARE WE?

The Manitoba Rett Syndrome Association (MRSA) is a registered charity founded by volunteers who have been affected by Rett syndrome. The Board of Directors is comprised of parents, caregivers, family members, support staff and physicians. MRSA provides help for new parents in Manitoba by providing parent/caregiver information packages and connecting them with other families in Manitoba. They provide ongoing support through a website, newsletters, and workshops.

OUR MISSION

MRSA’s main mission is to create awareness and improve understanding of Rett syndrome and to advocate for the needs of individuals with Rett syndrome and their families. We support parents, caregivers, researchers, medical professionals and other interested support agencies and individuals that are interested or already involved in furthering the management of Rett syndrome within Manitoba.

OUR HISTORY

MRSA was formed by three families in 1990. Rett syndrome had just been newly diagnosed and information about the disease was very limited and not very promising. Dr. Patrick McLeod, a pediatric geneticist who was researching Rett syndrome at the time, held a diagnostic clinic in Winnipeg. All three of their girls were diagnosed at that clinic. The diagnosis changed their lives forever. And as a result, these three families began searching for as much information and help as they could find. By doing so, the three Manitoba families ended up connecting at a conference in Saskatoon, which was hosted by the Saskatchewan Rett Syndrome Association. With the help of family and friends, this dedicated group of parents (MRSA) worked hard to raise awareness of Rett syndrome in Manitoba. They developed and distributed brochures, conducted newspaper & TV interviews, held conferences and started the Manitoba Rett Syndrome Association and its website. Their fundraising efforts provided services to improve the lives of children with Rett syndrome in the community. They provided services such as music therapy, modified school programs and a variety of recreation/therapeutic equipment for the girls. These families continued to participate in conferences in Canada and the USA so that they could provide the most up to date information to their daughter's teachers, educational assistants, therapists and doctors in Manitoba. They worked in conjunction with organizations like the International Rett Syndrome Association (Rettsyndrome.org) and the Ontario Rett Syndrome Association to help raise awareness world-wide.