Global Ataxia Support Group
Please read through the Frequently Asked Questions before registering.
Frequently Asked Questions
Join us every Friday!
Once you register for our weekly meetings at 3pm, for example, you won’t have to register again next week. However, the registration for 3pm and 6pm is separate.
3PM EST (8PM in UK, 5AM Sat. in Sydney, AU)
6PM EST (11PM in UK, 8AM Sat. in Sydney, AU)
Join us on August 28th!
Registration for the speaker sessions is separate from our regular Friday sessions. Even if you have registered for those, you’ll have to register again. Sorry for the inconvenience!
There are 5 timeslots available. Use the left and right arrows to cycle between them.
Dineke Verbeek is a Rosalind Franklin Fellow and Associate professor at the University of Grogingen in the Netherlands and her research focuses on unraveling the genetics and biological mechanisms underlying movement disorders, with special attention on the spinocerebellar ataxias. During her PhD studies, she made a significant contribution to the field of human genetics in spinocerebellar ataxia by identifying two novel SCA types (SCA19 and SCA23) and her work increased insight into the pathogenesis of SCA14 in cell model systems.
9AM EDT (2PM in UK, 11PM in Sydney, AU)
Janet Edmunson is the president of JME Insight, is a trainer, motivational speaker, writer, and health promotion professional who is dedicated to using her life experiences and inner values to support the growth and self-esteem of the people her life touches.
12 PM EDT (5 PM in the UK, 2 AM Saturday in Sydney, AU)
Dr. Iris Kulbatski is the Founder and Executive Director of WHEEL DANCE. She holds a Ph.D. in Medical Science, with a specialization in spinal cord regeneration. She is grateful to be a part of the WHEEL DANCE community and for the opportunity to bring awareness to issues of accessibility and inclusivity.
3 PM EDT (8 PM in the UK, 5 AM Saturday in Sydney, AU)
B.L. Wylie is the Program Director and founder of Skate Therapy. She is a retired figure skating coach who has worked with competitive skaters and founded Skate Therapy in 2011 which focuses on providing an on-ice experience for individuals with disabilities.
6 PM EDT (11 PM in the UK, 8 AM Saturday in Sydney, AU)
Gavin Mogan has lived with Parkinson’s for 11 years and finds exercise and a positive attitude essential to maintaining a good quality of life. He is also a certified personal trainer in Richardson, Texas, offering personal and group training, with a particular focus on helping others battling Parkinson’s or other health issues.
9 PM EDT (2 AM Saturday in the UK, 11 AM Saturday in Sydney, AU)
“I have really appreciated the whole for ataxia support group meetings because I have met people with Ataxia from all over the United States and other countries even. I’ve met a few people that have just been diagnosed and have a lot of questions, and I have met some people that have been living in coping with Ataxia for a long time. It has been nice to feel like I’m not the only one on this journey. In the support group, I can even offer some ideas not really advice but ideas to other people going through the same thing. And I couldn’t think of one instance recently when we are able to laugh about some situations that we have in common.”
“Attending the virtual support group meetings has been a fantastic blessing. Before my diagnosis I was very social, an educator in the community … Interacting with lots of different people was normal. The Hope for Ataxia Support Group meetings have opened that door once again for me. I’m making all kinds of connections, from all over the world and seeing that living with Ataxia is challenging but possible. No harsh judgment, I love this group!”
“Really enjoy meeting others from around the world and sharing the complexity of life with Ataxia! Attending the Virtual global ataxia meetings helps you to realize you aren’t alone.”
“Great group! I love talking to others with Ataxia….support, advice, and understanding. Getting to know others’ faces and keeping up to date with them.”