Spotlight on Pompe disease
As International Pompe Day takes place every year in April, we want to raise awareness about this rare condition. We are unaware of anyone who is living with the condition in Ireland and so we are simply sharing information about the condition.
Spotlight on members of our community living with neuromuscular conditions: Brendan O’Connell
Over the coming months we’re sharing spotlights on individual members of our community who are living with a variety of neuromuscular conditions. We began on Rare Disease Day, 29 February, to draw attention to the fact that rare disease isn’t just for one day. By sharing individual stories and information on their conditions, we want to raise awareness about the many neuromuscular conditions experienced by the diverse members of our community to whom MDI offers support. Special thanks to Brendan for sharing his story and raising awareness about McArdle disease, which is also called Glycogen Storage Disease Type V (GSD V). The spotlights will be added to a dedicated page on our website so that you can learn about people’s experiences of living with each condition.
Spotlight on members of our community living with neuromuscular conditions: Tania Quill
We began on Rare Disease Day, 29 February, to draw attention to the fact that rare disease isn’t just for one day. By sharing individual stories and information on their conditions, we want to raise awareness about the many neuromuscular conditions experienced by the diverse members of our community to whom MDI offers support.
Spotlight on members of our community living with neuromuscular conditions: Jimmy Murray
I don’t like the words inspiration / inspiring. That’s not my role in life. My job is to live life and not be an inspiration to people, though they mean well. A lot of people with disabilities hate that.