1. When was the group formed?
2 July 2011
2. How was it started?
I created a new Facebook group, called it the Australian Dystonia Support Group, and described it as ‘A place where we come together to support each other, while sharing the good, the bad and the ugly’. I wanted it to be a place where people felt comfortable to share their experiences, to ask questions and to help each other. One of the original members, Nadine Schnabel, became an Admin member and organised the first set of ADSG cards.
3. Why did you decide to form a group?
During my search for Dystonia information, support and understanding, I discovered overseas Dystonia websites and support groups. As I read about the devastation faced by many of the contributors, I realised that more support was needed in Australia. I felt it was important to have a group that could discuss issues relating to the Australian Health System, as well as offer the names of Australian Neurologists and Health Practitioners. It was also very important that we raise Dystonia Awareness within Australia, and to connect with the Movement Disorder Specialists and doctors who were involved in the treatment and research of Dystonia.
4. How many members did you start with?
I had met about 4 people on overseas groups and forums, and they joined the group when I first created it.
5. How many members now?
We have 282 Facebook Members, and some of them are family members. We also have an Email Distribution List, as some members aren’t on Facebook. All up, we currently have around 300 members.
There are now 3 other Admin members – Lisa McInnes, Hariklia Nguyen and Sue Kennedy. They have made amazing contributions to the ADSG, and they continue to support the members and raise awareness.
6. What are the group’s achievements so far?
The group continues to grow and we are able to connect with more people with Dystonia. We now have lunches, gatherings and meetings in most of the capital cities, and we are finally able to meet other Dystonia sufferers, in person. It is difficult to explain how wonderful it is to finally connect with others who understand and live with the same condition. The members feel less isolated and alone. This is a wonderful feeling and achievement.
We now have an Australian Dystonia Support Group Website and a Facebook Community Page. These additions enable friends and family members to read and understand more about this condition. The members are also able to access more information and medical updates relating to this condition. We now have ADSG cards and Awareness Materials that are distributed to Neurologists, Health Practitioners, Pharmacies, and to any person or place that will help us to connect with others, while continuing to raise awareness.
In 2014, the ADSG held a September Dystonia Awareness Month, and members set up displays in pharmacies, shared Awareness Materials through Social Media, created an Awareness Video which we have now added to our website and community page, and so much more! We hope to do something similar this year, and we hope to make the awareness month bigger and better.
7. How has the group helped you?
Prior to having Dystonia, I was a school teacher and I loved helping others. When I was no longer able to work, I needed to feel that I could contribute to life and to helping people – the ADSG allows me to do that!
Each day, I connect with people who are struggling to deal with this condition. I sympathise and empathise with them and they support me in return. I have gained lifelong friendships with many of the members, and it is so reassuring to know that we will always be there for each other.
8. Any goals or hopes for the future?
My goal is for the ADSG to continue to help support and educate others about Dystonia, and to assist others in their awareness and fundraising campaigns, so that funds can be raised for research grants.
I am just one of many Dystonia sufferers. We all hope to spread the word and to gain some recognition and understanding.