Launching a new support hub for people living with spinal muscular atrophy (SMA)

Navigating life with a rare disease can be challenging, but also rewarding. To help create a community featuring the real-life experiences of those living with or caring for someone with spinal muscular atrophy (SMA), NATIONAL collaborated with Roche Canada—a company dedicated to advancing treatment options and patient outcomes—to elevate, empower, and engage Canada’s SMA community.

In 2021, Roche Canada received Health Canada approval for its new treatment for SMA, a rare motor neuron disease that affects the voluntary muscles used for activities such as crawling, walking, head and neck control, and swallowing. In Canada, approximately 1 in 6,000 new-born babies are affected with SMA and about 1 in 40 people are genetic carriers. Roche’s new treatment, EVRYSDI (risdiplam), is the first medicine for SMA that can be taken at home and is administered once daily by mouth or feeding tube.

To raise awareness among Canada’s SMA community of this key milestone, Roche Canada engaged NATIONAL to develop and execute a strategic communications plan that included reaching key audiences with news about this important approval, as well as to develop a bilingual digital support hub for the SMA community: SMAMyWAY.ca.

NATIONAL executed targeted media relations efforts alongside members of the SMA community, including those living with the disease, caregivers, healthcare professionals and members of key patient advocacy groups such as Cure SMA Quebec.

Building on the announcement, the SMAMyWay.ca online hub was adapted from a global campaign and localized to reflect the experiences of the Canadian community. It was designed as a space for those living with SMA, their caregivers, families, and friends, to listen and learn from a variety of experiences, share authentic moments, and celebrate both the big and small milestones. Co-creating content with those living with SMA was at the forefront of the program to ensure the most authentic storytelling was featured, allowing contributors to take ownership of their voice and lived experiences and to feel empowered to connect, engage and share their real, everyday moments.

To amplify the launch of SMAMyWay.ca, NATIONAL developed and executed an empathy-led integrated communications campaign combining earned and owned social media promotion, paid social promotion, contributor content and using SEO and SEM to drive Canadians to the new SMA community hub. NATIONAL also worked with influencers featured on the website, as well as patient advocacy groups to help share the news of this exciting launch among their networks to help raise awareness and increase engagement.

To complement the integrated campaign, NATIONAL collaborated with one website contributor in particular, Ben Bourne Flosman, to share his story by securing an earned opportunity with prominent health and rare disease podcast, Sickboy podcast. Ben highlighted the unique challenges he faces while living with SMA—as well as shared how he is a trailblazer in helping camps and schools become more accommodating to people with disabilities, including the importance of positivity, acceptance and gratitude. The episode was Sickboy’s most downloaded in recent months, received strong reach and positive engagement across social platforms, and was shared on their blog.

NATIONAL is proud to have been part of this important initiative and looks forward to expanding this work into 2022 to further support the SMA community from coast to coast.