Resources for Parents of Children Who Have Dystonia

The DMRF Canada is pleased to launch a new support program for Parents of Children who have Dystonia, and Children and Teens who have Dystonia. This program has been generously funded by Allergan International Foundation. 

Objectives of the Program

  1. Reduce the stress and isolation for both parents of children who have dystonia and the children themselves;
  2. Create a central place for resource/documentation that is relevant for children and parents of children who have dystonia;
  3. Create a mechanism or system that will bring parents of dystonia together from all areas across the country, and a place where information and resources can be shared.

Resources for Parents: 

Being a parent of a child (or children) who have dystonia can be extremely difficult, isolating, and stressful. If you are interested in joining a group for other parents in your situation, please consider joining our Facebook Support Group.

Finding medical professionals that practice in pediatric movement disorders can be difficult. We have compiled a list of professionals for your reference here.

A note that we will be updating these resources in the months ahead. Please help us to create supports that are useful for you and your family.  Fill out our survey here

As well, there are other links/ resources available:

Resources for Children and Teens who have Dystonia: 

  • Click here for our Dystonia Guidebook for Kids (ages 8 - 12)
  • Click here for our Dystonia Guidebook for Teens (ages 13+)
  • Read here for an article written by DMRF Canada Teen Ambassador, Sarah.

Frequently Asked Questions from kids who have dystonia 

Information from the Hospital for Sick Children: