Listening to the wants and needs of a rare disease community inspired Syneos Health and Genentech to go beyond the tried-and-true healthcare communications playbook. The team took collaboration to a new level, empowering the Spinal Muscular Atrophy (SMA) community to create a public relations program “for the community, by the community.” The result was something wholly unexpected: a song and music video called SPACES that aimed to spark important conversation about disability visibility and representation.
The insight that sparked inspiration
In talking with people with SMA, Syneos Health and Genentech noticed three themes that rose to the top and ultimately inspired SPACES:
- People with disabilities are often underrepresented or misrepresented in media and social media.
- Those with SMA want to be known for their skills and not defined by their disability.
- Music is an important outlet for connection and self-reflection in the SMA community.
The making of SPACES
From beginning to end, SPACES was led by creative voices from within the SMA community. Eleven diverse creatives and advocates with SMA conceptualized the project during a brainstorm facilitated by Syneos Health and Genentech. The discussion revealed that the song and music video must demonstrate that people with SMA are living multifaceted, fulfilling lives. Song lyrics that were written after the brainstorm, “I’m proud of who I am, no one I’d rather be, I am worthy of anything and everything,” reflect this sentiment. To ensure the song would resonate beyond the SMA community, there is no mention of SMA or living with a disability–a deliberate choice by the contributors.
The big ‘aha’ moment came from James Ian, a singer/songwriter living with SMA, who wrote the lyrics and performed the song. James proposed SPACES as a theme to represent the need for people with disabilities to be seen in all the diverse and unique spaces they occupy.
Dominick Evans, a non-binary, transgender, queer filmmaker and Hollywood consultant with SMA, built on this theme for the music video. Contributors asked that the video help people to see their humanity and their everyday lives. Thus, the video for SPACES features moments like cooking dinner, taking a walk, celebrating a birthday or reading a story before bedtime.
Why SPACES matters
- SPACES marked a changing tide in how pharmaceutical companies could work with the communities they serve. As James Ian put it, “SPACES is a huge slap in the face to the status quo.”
- SPACES demonstrated the incredible power of a program that is shaped–from beginning to end–by voices from within a community. It showed the world how a small, determined and passionate group of people could work together to change societal views of disability.
- SPACES attracted significant national media attention and highlighted the critical role of disability within the diversity, equity and inclusion conversation.
Join the conversation and show your support by sharing SPACES on social media with the hashtag #CreateSpaces.
