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Make a #SpinrazaNOW Video

Short Video Script.

Individual: “This is a message for Minister Simon Harris and the HSE”
Pan out to Group Shouting or Individual saying firmly: “Minister Harris! Make Spinraza available NOW!”
Optional Individual: “Spinraza can change the lives of people with SMA (my life). We’re asking Minister Harris and the HSE to make this miracle drug available and offer hope where there was none before.”

That’s it! Feel free to vary this as much as you like and ask as many people as you can to do the same. The more people you know that do videos the further we’ll reach.

Video Description

Each video description or post should include a brief explanation as below:

We made this video to ask Minister Simon Harris and the HSE to make Spinraza available for people with SMA. People with SMA live mighty lives that are worth maintaining.

Spinraza is a new drug that has shown real benefits for people with Spinal Muscular Atrophy (SMA). Spinraza can help slow the progress of the condition and in some cases help regain lost function. It’s a bit of a miracle. Spinraza is available in over 20 other EU countries including the BeneluxA group that Ireland just joined to negotiate medicine costs. All the other countries in the group have access to Spinraza except Ireland.
If you think the quality of life of people with SMA matters then PLEASE make your own #SpinrazaNOW video and upload it to wherever you post most with these hashtags. #SpinrazaNOW #SMAIreland and tell the guys at @SMAIrelandCom so they can see your video.

Send us your video

If you’ve made a video on your phone or computer, first share it with your friends and ask them to make one. If you don’t have anywhere to put it or if you’d prefer it to post it to our Youtube and Facebook by all means send the video to us.

Send a letter...

We’d love if you would send a letter to your local politicians asking them to intervene with the Minister on behalf of all SMA sufferers. Please ask 3 or 4 of your friends to do it too.
Every little helps…

Sign the petition...

We’d love if you’d sign this petition put together by parents of a child with SMA. Tag it #SpinrazaNOW and share it on your social accounts. Help us sway this government into making this drug available and changing the lives of SMA sufferers.