Approve access to miracle drug Spinraza in Ireland!!!

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Hi 

We are asking you for your help and support in signing and sharing this petition to raise awareness and to plead with the Irish Government to approve and fund the drug Spinraza for our son and for the wider SMA community in Ireland.


Isaac Brennan is 6 years old from Kilkenny City and was diagnosed with Spinal Muscular Atrophy Type 2 when he was 2 years old. 
At the time of the diagnosis, we were told that SMA is a progressive muscle weakness and Isaac would never walk independently, he would be a wheelchair user and would have a life expectancy of 20 years.
As you can imagine this was devastating news to be at the receiving end of and it took us a long time to come to terms with his diagnosis.
Isaac goes through intensive physio therapy and occupational therapy everyday with us to keep his muscles strong and active.

In January 2017 2 children with SMA type 1 were granted access to the drug in Ireland on a compassionate basis. 
This has proven to be a huge success in prolonging their lives and improving their quality of life.

Access to treatment of this drug would help improve Isaac's strength and possible ability to walk and potentially increase his life expectancy. 

Spinraza is now available (funded by the governments) in 20 countries in Europe.

Mr. Simon Harris very recently signed Ireland up for BeNeLuxA - an initiative to gain greater access to more innovative, new medicines. This group comprises of Belgium, Netherlands, Luxembourg, Austria and now Ireland. 

All countries in this initiative have access to the Spinraza drug apart from Ireland!!!

Please help the 26 children in Ireland affected by SMA and sign this petition.

You can help by just adding your name to the petition. 

Please share it among your friends and family.

Thank you for your support

Carol, Philip, Isaac and Luke Brennan 

 



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