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Experimental no more; Drug helping Windsor baby approved in Canada | Windsor Star

Lilah can move her arms and legs and grasp things. She has ripped out her feeding tube — not a good thing, but an accomplishment nonetheless — and has figured out that repeatedly clicking her tongue can make the alarm on her ventilator sound. She can breathe on her own for up to 10 minutes at a time and enjoys time sitting up in an wheelchair or cuddled in her mother’s arms. Lilah’s progress is credited to a drug called nusinersen, trademarked as Spinraza. It’s the first treatment for SMA to be approved in Canada. Developed by Ionis Pharmaceuticals and licensed to Biogen Canada Ltd., Spinraza showed positive results in clinical studies involving more than 170 patients. It kept babies alive and allowed them to achieve milestones such as the ability to sit unassisted, stand or walk, Biogen said in a news release this week. “Based on the robust efficacy and safety profile demonstrated in the clinical trials, we believe Spinraza will have a meaningful impact on individuals living with this devastating disease,” said Wildon Farwell, Biogen’s senior director of clinical development. SMA affects one in 10,000 babies. One-fifth of the population is a genetic carrier. Human studies began in 2011 and the drug got its first regulatory approval by the U.S. Food and Drug Administration in December. Eighteen-month-old, Lilah Lamont, who suffers from spinal muscular atrophy, lies in her bed at home Thursday, July 6, 2017. Lilah has been taking a newly approved drug, Spinraza, which has dramatically improved her condition.Dax Melmer / Windsor Star Lilah was not part of a clinical trial but got what’s called “special access” to the drug, Nicole explained.

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