I made this video to ask Minister Simon Harris and the HSE to make Spinraza available NOW for people with SMA in Ireland. 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.