Second Informal Meeting
The second meeting was held on the 28th of Jan 2016.
Speakers:
Please see below for the video:
The second meeting was held on the 28th of Jan 2016.
Speakers:
- Hannah Pennington – Welcome
- Adrienne to introduce Prof Ingrid Winship (5 mins)
- Prof Ingrid Winship - Overview of neuromuscular diseases (10 mins)
- Karni Liddell (15 mins) - Personal experience
- Fin Kelly (10 mins) - Personal Experience
- Emma Bradhurst (10 mins) - Personal Experience
- Hannah Pennington to close (10 mins)
Please see below for the video:
First Informal Meeting
The first informal meeting of the Neuromuscular Social Support Group for Young Adults was a great chance for young people, their families and friends to come together and learn about important developments in the medical field, hear inspiring personal stories and discuss practical issues. Louisa Di Pietro, Group Leader of the Genetic Support Network of Victoria, opened the session and set the tone for the evening, describing how the idea arose and the need to support young people in this situation. We then heard from Associate Professor Paul James, Clinical Geneticist, about exciting new treatment, testing and research news, before Hannah Pennington described her own personal perspective on being diagnosed with a neuromuscular condition and her resilience in moving forward. Adrienne Sexton, Genetic Counsellor, finished the session by discussing experiences of young people who have visited the genetics service with neuromuscular conditions, the issues they face (including relationships, at home, at work and socially) and well as some practical considerations and solutions. It was an interesting session which blended information and support, filling a need for many young people living with the diagnosis of a neuromuscular condition.
1) Treatment, Testing and Research updates - click here for the presentation (pdf)
Associate Professor Paul James, Clinical Geneticist
2) Personal perspective on being diagnosed with a neuromuscular condition
Hannah Pennington
3) Experiences of people who have visited the genetics service: What are the issues facing young adults with neuromuscular conditions, in relationships, at home, in social situations, at work?
Adrienne Sexton, Genetic counsellor
View the video recording here.
The first informal meeting of the Neuromuscular Social Support Group for Young Adults was a great chance for young people, their families and friends to come together and learn about important developments in the medical field, hear inspiring personal stories and discuss practical issues. Louisa Di Pietro, Group Leader of the Genetic Support Network of Victoria, opened the session and set the tone for the evening, describing how the idea arose and the need to support young people in this situation. We then heard from Associate Professor Paul James, Clinical Geneticist, about exciting new treatment, testing and research news, before Hannah Pennington described her own personal perspective on being diagnosed with a neuromuscular condition and her resilience in moving forward. Adrienne Sexton, Genetic Counsellor, finished the session by discussing experiences of young people who have visited the genetics service with neuromuscular conditions, the issues they face (including relationships, at home, at work and socially) and well as some practical considerations and solutions. It was an interesting session which blended information and support, filling a need for many young people living with the diagnosis of a neuromuscular condition.
1) Treatment, Testing and Research updates - click here for the presentation (pdf)
Associate Professor Paul James, Clinical Geneticist
2) Personal perspective on being diagnosed with a neuromuscular condition
Hannah Pennington
3) Experiences of people who have visited the genetics service: What are the issues facing young adults with neuromuscular conditions, in relationships, at home, in social situations, at work?
Adrienne Sexton, Genetic counsellor
View the video recording here.
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