SPACES

SPACES is a first-of-its-kind musical collaboration created for everyone with a disability by the SMA community. Each creative component of the program – song, music video and album art – was led by someone with SMA. It uses the universal language of music to elevate the many voices of this community and celebrate our individuality…

‘This disease will slowly rob me of everything’: Why are Canadians living with rare diseases waiting for treatment?

COVID has proven we can quickly set up infrastructure without long-term clinical data. It’s time to do the same with rare diseases, says Durhane Wong-Rieger, president and CEO of Canadian Organization for Rare Disorders. Vanessa Hrvatin, Feb 28 2022 Sasha Kirkland, pictured with her husband, Mark and son Maks, lives with spinal muscular atrophy (SMA).…

SMA Data Update

 SMA Data update with Biogen.   Dear members of the SMA community, Following your request for updates regarding new SMA data in adult patients, we wanted to share that a real-world study of nusinersen (SPINRAZA ™) use in teens and adults with SMA was published in The Lancet Neurology on March 18, 2020 in a…

Nova Scotia broadens access to SPINRAZA™ (nusinersen injection)Cure SMA Canada is recognized for our contribution to the Canadian government’s understanding of the impact of SMA

Cure SMA Canada is recognized for our contribution to the Canadian government’s understanding of the impact of SMA and played a major role in the associated changes to access to treatment brought by this contribution. Thank you to all of those who participated and supported Cure SMA Canada initiatives!  Together we truly do make a…