AKNate
Distinguished member
- Joined
- Oct 25, 2016
- Messages
- 181
- Reason
- Loved one DX
- Diagnosis
- 10/2016
- Country
- AUS
- State
- NSW
- City
- Sydney
Hi,
I was listening to a totally unrelated podcast yesterday which got me empowered to want to raise awareness in AU/NSW for MND.
This morning the NSW govt. gave $2 mil (or more) to cancer research and 2 other diseases as well. My husband made a comment saying "thanks for leaving us out!".
I'm tired of how slow the AU medical system, we have a lot of red tape and time is of the essence for our PALS. So, I want to raise awareness and rally to get Radicut/Radicava made available for our PALS.
I don't know where to start or how to.. so i'm open to feedback and suggestions. I can contact the NSW MND association again however when i first contacted them re: getting the medicine into the country they basically said "we were waiting for someone to call, we don't know what to do". That's not good enough. You were waiting? Why didn't you THINK about what to do while you were waiting!
Let's all band together and create a movement!
I was listening to a totally unrelated podcast yesterday which got me empowered to want to raise awareness in AU/NSW for MND.
This morning the NSW govt. gave $2 mil (or more) to cancer research and 2 other diseases as well. My husband made a comment saying "thanks for leaving us out!".
I'm tired of how slow the AU medical system, we have a lot of red tape and time is of the essence for our PALS. So, I want to raise awareness and rally to get Radicut/Radicava made available for our PALS.
I don't know where to start or how to.. so i'm open to feedback and suggestions. I can contact the NSW MND association again however when i first contacted them re: getting the medicine into the country they basically said "we were waiting for someone to call, we don't know what to do". That's not good enough. You were waiting? Why didn't you THINK about what to do while you were waiting!
Let's all band together and create a movement!