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In Their Own Voices: A Song By and For Those Touched by Rare Disease

In Their Own Voices

Although individually they are classified as “rare,” considered together, rare diseases affect as many as 1 in 10 people in the United States.1 Globally, rare diseases impact 3.5%-5.9% of the world’s population.2 That’s one of the reasons that Rare Disease Day, which occurs annually on the last day of February, is so important. It’s an opportunity to raise awareness for the many people who are less often in the spotlight. This year, Pfizer wanted to do something special to honor rare disease patients and their families. So, we partnered with two incredible groups—Next Step and Kendall Square Orchestra—to commission the composition of an original song.

The result is “Come and Walk a Mile.” It’s the story of real young people, in their own voices, sharing what it’s like to live with a rare disease. It’s about perseverance, moving forward, aiming high, and being seen for who you are rather than the condition you live with.


Kendall Square Orchestra with Next Step, “Come and Walk a Mile”

Next Step, which was founded in 2001 by Executive Director Bill Kubicek and the late actor and philanthropist Paul Newman, aims to shatter limitations and elevate the aspirations of young people, offering services to those with life-threatening diseases as they transition from pediatric to adult care.

Kimberly Khare, Music Therapy Director at Next Step, believes in using music to help young people find their voice.

“Our young people have such capacity, vibrancy, and potential,” she says, “and serious illness is hogging the mic of their life. They are incredible creators, living the ‘everlasting mile’ often with little to no support given ableism, racism, and negativism. Despite these challenges, they build powerful communities together that center on wellness, shared experience, and empathy.”

Kendall Square Orchestra—which was co-founded in 2018 by Elena Spencer, Director of Kendall Square Technology Platforms and Outreach at Pfizer, and her former colleague Kelly Clark—uses music and events to support causes related to healthcare education, particularly for difficult diseases.3

“Making music has the power to evoke deep feelings and transport listeners into other people’s lives,” says Kristo Kondakçi, Music Director of the Kendall Square Orchestra. “As a person living with a rare disease myself, I was moved by how transformational the process of creating ‘My Mile’ was for the young people of Next Step and for our musicians, many of whom also live with rare diseases. It is more than a song, it is an anthem for the rare disease community, with the vision to empower listeners to express their stories and come together with empathy, joy, and courage.”

The song is meant to speak to people both within and beyond the rare disease community.

“We hope people living with rare diseases will hear ‘Come and Walk a Mile’ and know they are not alone— that this is a song for them, by them,” Spencer says. “And we hope that it will inspire those who are not touched by a rare disease to learn more.”

Pfizer is proud to have had the opportunity to collaborate with Next Step and Kendall Square Orchestra in celebration of Rare Disease Day, and the resilience of this extraordinary community.

We are grateful to those who shared their stories and were brave enough to lay bare their experiences, to those who created the music, and to those who will be moved by it.

Read more about The Story of Kendall Square Orchestra, a Symphony of Scientists.

Sources

  1. National Center for Advancing Translational Sciences. “You Are Not Alone.” https://rarediseases.info.nih.gov/ Accessed February 7, 2023.
  2. Rare Disease Day. What is a Rare Disease? https://www.rarediseaseday.org/what-is-a-rare-disease. Accessed February 7, 2023.
  3. Kendall Square Orchestra. https://www.kendallsquareorchestra.org. Accessed February 7, 2023.