Through research, Genentech uncovered that music was a universal and critical outlet for connection and self-reflection for the spinal muscular atrophy (SMA) community. Ultimately, the SMA community’s passion for music led to the big idea: a first-of-its-kind musical collaboration created for the disability community, by the SMA community. Genentech made a bold decision to relinquish control and let the community dictate what they wanted to talk about, and how. The big 'aha' moment came from James Ian, a singer/songwriter living with SMA, who proposed the theme, wrote the lyrics and performed the song.

One in four adults in the U.S. is disabled. Yet, disabled people are underrepresented or misrepresented in media. That’s why Genentech partnered with James Ian and the SMA community to develop SPACES, a first-of-its-kind musical collaboration designed to highlight the talents and humanity of people with disabilities to a broader audience.

SMA is a rare, progressive disease that causes muscles to become increasingly weak, and affects vital activities including breathing, eating and walking.

SPACES aims to amplify the voices of those living with SMA and spark dialogue about disability representation through the power of music. "We're in all the spaces that non-disabled people are, and we're going to take up spaces and do what we have to do. SPACES shows people with SMA living full lives with family and romantic love, excelling in the things we do. We are creatives, intellectuals and leaders. We crush it." - James Ian

SPACES is a first-of-its-kind musical collaboration created for the disability community, by the SMA community. James Ian, a singer/songwriter with SMA, wrote the lyrics and performed the song. Dominick Evans, a non-binary, transgender, queer filmmaker and Hollywood consultant with SMA, scripted and directed the music video. Zarek Elizondo, an artist with SMA, created the album artwork by using a digital pencil with his mouth.

The company engaged 11 SMA advocates and facilitated a brainstorm to conceptualize the project. The discussion revealed that the song and music video must focus on showcasing the strength and resilience of the community living multifaceted, fulfilling lives.

SPACES represents the need for disabled people to be seen in all the diverse and unique spaces they occupy. 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,” reflected this sentiment.

Genentech, a leading biotechnology company, wanted to establish itself as a trusted partner to the SMA community.

The company went to the SMA community to gather firsthand insights on what’s missing from the societal conversation. Three insights emerged:

? People with disabilities lack visibility and accurate representation in media.

? They are often held up as inspiration figures based solely on obstacles created by their disabilities, rather than their talents. They call this "inspiration porn."

? The SMA community is diverse, and anything Genentech does must represent this diversity.

The community decided to create a song full of hope that would get stuck in your head. Most importantly, the song would not mention SMA or living with a disability–a deliberate choice by the contributors. Additionally, it was important to avoid "inspiration porn" and make sure all of the content reflected that.

James teamed with other members of the SMA community to create SPACES from beginning to end, including Dominick Evans who directed the video from his bed using virtual technology due to his mobility challenges, becoming the first disabled person to ever direct a music video remotely.

SPACES marked a number of “firsts” for Genentech, including the company’s first-ever music video (launched in November 2021), and live global YouTube premiere. Another “first” for Genentech was adding the song to all major music streaming platforms, such as Spotify and Apple Music. Genentech then took it one step further and successfully pitched Spotify playlist curators with the ask to add SPACES to their playlists.

SMA influencers promoted SPACES and conversation quickly gained traction among the larger disability community with users quoting the lyrics, “I’m not invisible, I'm an original, I’m so much more than what you see or what you bargained for.”

SPACES created a movement for the larger disability community. Without a chart-topping artist, but through the power of music, SPACES showed the world the impact a small, determined and passionate group of SMA advocates could have on raising awareness of the need for disability visibility. It sparked an important dialogue on a national level, highlighting the critical role of disability within the diversity, equity and inclusion conversation.

The program marked a changing tide for how pharmaceutical companies can work with the communities they serve, beyond providing medicine. As James Ian said, “SPACES is a huge slap in the face to the status quo.”

Because of SPACES, James Ian was nominated by the disabled athletes community to sing the national anthem at the Special Olympics USA Games 2022.

Results include:

? 803K+ total views of SPACES videos

? 32K+ song streams in over 50 countries

? 1.6K+ Spotify playlist adds