We have frequently heard from family and friends who, after reading Emmett's Journey, literally do not know what to do. That is understandable - Spinal Muscular Atrophy is a disease that defies understanding. Emmett has been receiving a drug that is now approved by Health Canada. It is now being considered by provincial governments, however, due to the drug's exceptionally high cost, the drug is only being recommended to a very small subset of patients. Our government needs to approve this drug for all - it will improve the quality of life and literally save lives. Our government also needs to negotiate a much better price for this life saving drug, Spinraza.
Want to know what to do - take a couple of minutes and sign this petition. Share it with your friends.
Want to know why? Because Emmett!
Emmett is still part of the long term study of Spinraza. This means that for him the drug is provided at no charge and this will continue for the next few years. When Emmett began this drug trial, we didn't know if he was on the real drug or a placebo. We didn't know if it would work or not. We just knew that Emmett was losing strength and capability rapidly. His intelligent eyes asked us what was happening to him. And now we see him continuing to make progress and approaching his third birthday. We want him to see many more.
And we want other families facing this rare genetic disease to have hope. Spinraza is a treatment. It is not a cure. But it is hope.
Please fill out this petition.