Spinal Muscular Atrophy
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N.S. teen with spinal muscular atrophy applauds newborn screening at IWKVan Bernard, 17, says when he was born, little was known or could be done about his diagnosis. His mother says screening could help other families avoid the anxiety they felt.HealthAug 21, 2024
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Cyclist pedals across Canada to raise funds, awareness about genetic diseaseOne man is cycling across Canada to raise awareness around access to treatment for Spinal Muscular Atrophy, a genetic disease that affect's a person's ability to move.CanadaJul 9, 2023
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Activist Sammy Cavallaro awarded Quebec National Assembly’s Medal of HonourA young West Island activist and advocate for people with disabilities was awarded the National Assembly’s medal of honour Wednesday.CanadaJul 13, 2022
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Manitoba laboratory expands newborn screening programThe Cadham Provincial Laboratory is expanding its newborn screening process to include spinal muscular atrophy (SMA).HealthJun 9, 2022
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B.C. government funds new drug for people with spinal muscular atrophyThe annual cost of the medication — called risdiplam or Evrysdi — is between $93,456 and $354,000 depending on the age and weight of the patient.HealthFeb 15, 2022
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‘It’s bad’: B.C. family’s desperate plea after teen’s surgery cancelled 4 timesDevin Gallant's family says they were told he needed emergency surgery last summer. The procedure was booked for December, but has since been cancelled four times.HealthJan 22, 2022
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Alberta newborns will be screened for spinal muscular atrophy: ‘Every day counts’The Love for Lewiston Foundation and the Alberta Children's Hospital Foundation funded the launch of a spinal muscular atrophy newborn screening study in 2019, led by Dr. Jean Mah.CanadaJul 21, 2021
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Alberta family denied multi-million-dollar gene therapy fundingAn Alberta family has been dealt a devastating blow after being informed that their child does not qualify for funding for a costly gene therapy treatment.HealthApr 2, 2021
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Alberta covering expensive SMA treatment for Fairview toddler ‘Mighty Max’An Alberta toddler with a rare disorder will be have a multi-million-dollar treatment covered by the Alberta government.CanadaFeb 23, 2021
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GTA family fundraising to get life-saving drug for twins'It's really hard and it's really painful for us to see them fall down and lose their muscle ... we hope that our twins can get Zolgensma on time.'HealthFeb 20, 2021
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