Genentech, a leading biotechnology company, wanted to establish itself as a trusted partner to the SMA community. The company knows that making medicines is just one of the responsibilities to the communities it serves, and this commitment goes further.

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 the SMA community, from beginning to end, to develop SPACES, which aimed to amplify the voices of those living with SMA and spark dialogue about disability representation through the power of music. This meant leading an innovative approach to elevate the conversation about a rare disease to the national stage, all without a paid celebrity attached to the program.

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

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 went to the SMA community to gather firsthand insights on what’s missing from 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.

A comprehensive media strategy leveraged a multi-angle, diverse spokesperson approach and SMA influencers promoted SPACES on their social channels, quickly gaining traction among the larger disability community.

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.”

Disability representation and SMA awareness took center stage on a national level with an unprecedented 37 national media hits, including PBS NewsHour, Good Morning America, Forbes, CNN, PeopleTV and Inside Edition. National broadcast typically requires a six-digit sponsorship payment when a pharmaceutical company is attached. All media coverage for SPACES was earned and the volume unprecedented for a rare disease.

Because of SPACES, James was nominated by the disabled athletes community to sing the national anthem at the Special Olympics USA Games 2022. The program marked a changing tide for how pharmaceutical companies can work with the communities they serve, beyond providing medicine or a traditional awareness campaign. As James put it, “SPACES is a huge slap in the face to the status quo.”

SPACES results include:

803K+ total views of SPACES videos

2K+ earned stories

37 national stories including 14 top-tier outlets

100% of coverage mentioned Genentech

98%+ of coverage included 2+ program key messages

80% of coverage mentioned the importance of diversity, inclusion, and representation

60+ interviews coordinated

30 stories in collaborators' local markets

32K+ song streams in over 50 countries

1.6K+ Spotify playlist adds

50% increase to Genentech’s SMAMyWay.com patient website

4.6M+ social media impressions

995K+ engagements including shares from influential organizations and activists

900+ organic social posts

In surveying community members who participated in the SPACES project:

100% thought SPACES changed attitudes toward people with disabilities.

100% agreed SPACES fulfilled an unmet need for the SMA community.

100% believed Genentech is committed to the SMA community.