SMA Fight For Life
This petition had 17,169 supporters
Spinal Muscular Atrophy is a degenerative, motor neurone disease - often likened to ALS (suffered by famous physicist Stephen Hawking) but predominantly affecting babies and children. The devastating condition sees babies, most born apparently healthy, lose their physical abilities as they grow. In the most severe, and unfortunately most common, cases this eventually causes loss of the ability to move, to cough and fight common colds, to talk, to smile, to swallow food and even loss of the ability to breathe, 80% of the time leading to death before the age of 2. SMA is a merciless, horrific disease, responsible for the death of more children under 2 than any other genetic condition.
Last month, the FDA approved the use of the first ever treatment for SMA in the United States. This life saving drug, called Spinraza, has changed the face of SMA. Giving families affected by SMA hope for the first time. A previously untreatable condition is now treatable. Treated early enough babies never expected to sit unsupported are now taking steps for the first time and those treated later are remaining stable without further decline and maintaining their abilities. For the least severe cases of SMA this may mean the difference between a lifetime being able to walk and progressing to a lifetime of wheelchair use. For the most severe cases this may mean the difference between life and death.
Although this treatment was approved for use in the US last month, in Europe we continue to wait for approval. Time that people with SMA simply don't have. Time in which precious abilities and precious lives are being lost forever. We need your help and support to encourage the approval of Spinraza for use for all severities of SMA as quickly as possible. Please help us fight for life, because every day a person with SMA loses their fight left untreated. #SMAFightForLife
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