Creating a Disability Visibility Movement with Genentech & the SMA Community
A year after the successful launch of Genentech’s treatment for spinal muscular atrophy (SMA), the company wanted to further demonstrate its commitment to the SMA community and reach the portion of adults living with SMA who were not connected to the existing advocacy communities.
It was a time of great hope – in five years the community had gone from no treatments to three treatments. However, with therapeutic advancements, the community no longer sought a traditional disease awareness campaign.
Through trusted relationships and dialogue with the SMA
community, we identified three critical insights:
A need for authentic, diverse representation for the SMA community.
People living with SMA do not want to be defined by their disability, but rather known for their unique talents.
25% of U.S. adults are living with a disability, yet they are underrepresented or misrepresented in the media, often held up as inspirational—which is called “inspiration porn” by the disability community.
Armed with these insights, Syneos Health and Genentech decided to partner with the SMA community to change the status quo and, in the process, set a new standard for unbranded campaigns.
A first-of-its-kind musical collaboration – called SPACES – created for the disability community by the SMA community. SPACES was led by diverse creatives living with SMA from beginning to end – from brainstorming the message, to writing and performing the song, storyboarding and directing the music video and designing the album art. The program included many Genentech “firsts” including the: music video, YouTube Premiere, Instagram filter and Spotify playlist pitching.
SPACES amplified the voices of the SMA community and sparked important dialogue about disability visibility and representation on a national level. The approach and message culminated in a reach far beyond what is expected in the rare disease space and generated significant engagement from within the SMA community and the broader disability community:
earned articles and broadcast airings Including 19 top-tier national outlets
music video views, including the YouTube premiere, which received 83K+ views, 8.3K “likes” and 1K+ comments
song streams on Spotify and other music platforms in over 50 countries
social media impressions, 995K engagements and 900+ organic social media posts