Old 10-10-2017, 05:30 PM #1 (permalink)
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Default Nsw/au cals

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!
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Old 10-10-2017, 11:14 PM #2 (permalink)
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Default Re: Nsw/au cals

I found it helpful to show up at official meetings and get on the record, make personal relationships and go from there. Of course, that might not be possible in your situation, but it's one suggestion.
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Old 10-10-2017, 11:28 PM #3 (permalink)
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Default Re: Nsw/au cals

Thanks Mike - what kind of official meetings do you mean? I know someone in a local council... Do you mean council meetings?
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Old 10-10-2017, 11:56 PM #4 (permalink)
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Default Re: Nsw/au cals

Is there not a health cabinet minister and your local legislators to lobby? Also, letters to the editor, etc. could generate more awareness and followup coverage.

You want to have a specific proposal -- the more work you do setting something up, the more likely others are to fall into line. I would also enlist the best clinic(s) and hospital(s) into your league. They are used to at least regional advocacy and have contacts.
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Old 10-11-2017, 12:25 AM #5 (permalink)
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Default Re: Nsw/au cals

We do have a health minister however i wouldn't have a clue how to scream loud enough for them to hear me... I need to start small and work my way up to parliament.

Letters to the editor would be good! I need to figure out a clear point i want to articulate then circulate it to everyone. Our dr is trying to get Radicava administered in a hospital for my husband, so i don't want to step on anyones toes... but i feel like the whole system is slow!!!! And we need more funding
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Old 10-11-2017, 01:45 AM #6 (permalink)
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Default Re: Nsw/au cals

Don't want to step on toes? Then quit now until you want it bad enough to piss someone off.

When you show up early to some organization's meeting, you get to meet the members personally, maybe even tell some jokes with them.

I have, on many occasions, showed up and started participating at the table. Very quickly, I would be accepted as one of the board. I was able to influence the people who made the decisions.
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Old 10-11-2017, 04:45 PM #7 (permalink)
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Default Re: Nsw/au cals

I guess what I mean is, I'm so filled with anger I don't want to blow my chances of getting it in a hospital for my husband now. I can complain about how resistant our doctor was to it until it was approved in the US, how the first hospital here slugged us with so many bills when they promised they wouldn't... I don't know if anger is the right tack. I think I'll need to do a few drafts before I submit anything!

What board & meetings do you mean Mike? Government or MND Association?
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Old 10-11-2017, 06:26 PM #8 (permalink)
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Default Re: Nsw/au cals

Both. Find out what the MND Assoc actually DOES from day to day, and also remember that it is the government that carries the wallet. Visit your representative.
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Old 10-11-2017, 07:46 PM #9 (permalink)
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Default Re: Nsw/au cals

Ok, great advice. I'll chase the association and go see them too!
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Old 10-12-2017, 03:52 PM #10 (permalink)
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Default Re: Nsw/au cals

I would sit down with MND NSW as they are our advocates.
You could also make contact with Neale Danihers organisation - they raise money for the whole of Australia of course but are VIC based. The drive for MND that just started has already attracted a lot of money and the federal gov matches the Freeze for MND donations every year.

So there is stuff happening and there are people that can help you practically and with ideas and directions.

Maybe get your time in Japan sorted first though, you must be running on a high level of adrenaline xxx
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Old Yesterday, 06:23 PM #11 (permalink)
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Default Re: Nsw/au cals

Yep Tillie, i do that sometimes - run on a high level of adrenaline hehe

I'm thinking of emailing them while over here to get the ball rolling. Our family surprised us and are doing the Walk to D'Feet MND fundraiser again - they've almost hit $10k!! Coupled with the $3.5k i raised, that's a lot of money. I want to mention that in the email and ask them to help push this medicine through ASAP plus start raising more awareness in NSW somehow.

.... i'm doing it again, adrenaline...
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Old Today, 12:50 AM #12 (permalink)
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Default Re: Nsw/au cals

Of course MND NSW is not part of our medical system. They are a non profit NGO formed to assist people in NSW. While we would love them to be perfect, they are doing amazing things with what they have.

I would keep at them - email and keep asking definite questions so they can find answers. I think they would love to solve this across the state if they can!

Run with that adrenaline

How are things going in Japan?
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Old Today, 12:56 AM #13 (permalink)
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Default Re: Nsw/au cals

I just think if they made a bigger push with the govt. and TGA, they'd have more power than just me...

Things are good - it's been raining almost non stop and last night there was a big storm so it's made it very difficult to get out of the room! Today the sun is out, so i'm excited to go out and have some nice dinner with the hubby.

In terms of treatment, it's going well - much easier here!!! All doctors were happy to see him again and he gets a thrill when they comment on how good he looks/how much strength he has - so that makes me happy
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