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Colchester boy with Spinal Muscular Atrophy is fifth baby at hospital to receive £1 79m wonder drug

S porean parents launch crowdfunding campaign to buy world s most expensive drug Zolgensma for baby with SMA

The Online Citizen Asia S’porean parents launch crowdfunding campaign to buy world’s most expensive drug Zolgensma for baby with SMA Community

Texas adds life-threatening Spinal Muscular Atrophy to routine newborn screenings

Faith Fortenberry turns 10-years-old next month. “I like to swim. I swim a lot in the summer and I also like to do arts and crafts. I love to paint and sketch,” Faith said with a big smile. Those are all typical summer activities for Texas kids, but Faith’s journey has been anything but ordinary. “She was diagnosed with Type 2 Spinal Muscular Atrophy (or SMA). At that point, she was already 17 months in and had that much time of muscle wasting and there weren’t any approved drugs or treatments,” said Faith’s mom LeeAnn Fortenberry. Now there are several life-saving treatments that can prevent or stop the disease.

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