This webpage came about from the Facebook page “DNM1 Dynamos’ Connecting DNM1 families’.
In the last 6 months families have begun to receive diagnosis for their children. Research papers are starting to be published about the thoughts and findings , and clinical presentation of DNM1 effected children. So what do we know?
At the moment , we have connected about 8-10 families we have connected with.
[table in here]
The initial research paper presented 5 children. We are not sure as to the location or status of these children, as none of them match the presentation of the children we have met.
All the children and their families have been on different, and challenging journeys and united by their love for their child.
By starting a webpage to compliment our small Facebook group we hope to find and connect with more families. We hope to share what treatment and medications have been working – and our experiences of what hasn’t, all in one spot.
Most of all, we hope to learn about the condition, and how to maximise the opportunity in our children.