When a child is diagnosed with dystonia, parents may not know where to turn. There are Resources to Help You:
Resources and Materials for you to Share with Children:
- Download this dystonia poster for children.
- Watch this animated video series, courtesy of DystoniaUK.
- Request educational materials from the DMRF Canada, including a copy of Never Look Down, to help inform your child's teachers and school administrators. Consider the best way to help your child's friends and peers understand dystonia. Email: firstname.lastname@example.org to request your copy today.
Resources for Parents:
- Read an article on Journeys into Parenthood, courtesy of the Dystonia Medical Research Foundation (DMRF)
- Read an article on Becoming a Mom, from DMRF Dystonia Dialogue, Spring 2021 Vol. 44 No. 1, courtesy of the Dystonia Medical Research Foundation (DMRF)
- Focus on: Childhood Dystonias
- Listen to two separate webinars on this topic.
- Financial Resources, Credits, and Government Assistance Programs.
- Click here for details on dystonia, courtesy of About Kids Health, from the Hospital for Sick Children.
- Mental Health and Wellness Supports for adults, teens, and kids, courtesy of Holland Bloorview Kids Rehabilitation Hospital
Meet Other Parents:
- Consider joining the DMRF Canada Facebook Group for Parents.
- The DMRF can try to individually match you with families with similar diagnoses, in your area of the country, and/or with children similar in age. Just ask! Or - Connect with other families in the dystonia community.
Pediatric Neurologist Listing:
- Consider consulting a pediatric neurologist with training in movement disorders or a movement disorder neurologist who treats children. Click here for a listing of specialists who treat children and teens with dystonia in Canada.
"As the Mother of two little boys who suffer from dystonia, I know firsthand the importance of a strong, supportive community for parents who are raising children with Dystonia. Having a network of other parents who understand the complex and unique challenges that children who suffer from dystonia face, throughout various stages of childhood are invaluable. Because of this network, I have discovered new strategies to help my boys, and have been able to learn about what to expect as they grow and change. But most importantly I have been offered support when I needed it.
On behalf of the DMRF Canada, we are very grateful to the Allergan International Foundation for their generous support of this very important initiative”
– Heather Connor, former DMRF Canada Board Member