Celebrating RARE Champions of Hope Through Song

Every child living with a rare disease has a unique and powerful story that deserves to be heard. When children have the opportunity to share their experience through song, we often get a deeper understanding of their perspective and uncover their remarkable strength – their stories spread hope to others impacted by rare disease. Horizon launched the #RAREis Playlist initiative in 2018 in partnership with Sing Me A Story Foundation and Global Genes to elevate the stories of children living with rare disease through song. To date, it has touched the lives of nearly 50 children living with rare diseases and each has their own song inspired by their stories.

The #RAREis Playlist made a special appearance at the 2020 Global Genes’ RARE Champion of Hope Celebration where rare disease leaders, advocates and families gathered virtually to recognize the those who’ve inspired change and have made a groundbreaking impact in the rare disease community.

Tim Walbert, chairman, president and chief executive officer of Horizon Therapeutics, was honored with the 2020 RARE Champion of Hope Industry Partner award for his work to advance rare disease therapies and his dedication to the rare disease community through Horizon’s #RAREis program.

The RARE Champion of Hope Celebration came to a close with a special #RAREis appearance. Singer and songwriter Kat Perkins performed a song from the #RAREis Playlist – “Hey Brother,” which tells the personal story of John, a child living with tuberous sclerosis complex (TSC), a rare genetic disorder causing tumors to form in different organs, primarily the brain, eyes, heart, kidney, skin and lungs. After the performance, John and his family joined Kat virtually for a live Q&A to discuss the emotional impact of John’s song.

“This experience was a moment when we could celebrate John and all of his accomplishments,” said John’s dad. “John is an inspiration to all of us.” The song’s lyrics, “Whether the weather lasts forever, maybe the moment is laughter and sun. Whether the days are gray and lonely, I always know I have someone,” remind John’s family of his incredible strength to fight TSC each day with a smile on his face. “Hey Brother” serves as a symbol of hope to John’s family, and they’re overwhelmed with emotion each time they hear it.

“One of the coolest things that I learned from a young age was that you can relate to everything through music.” – Kat Perkins

Music has the power to transform a story into a message of hope that helps others in the rare disease community feel heard, inspired and connected – the impact of John’s song is a testimony to this belief. “In the end, our wish for John’s story and this song is to spread education, awareness and hope for a better tomorrow to those affected by rare disease,” said John’s dad. Music empowers children to tell their rare disease story from their own perspective, and through the #RAREis Playlist initiative, we’re able to give children’s stories a deeper meaning, spread hope and help make the world a brighter place for those, like John, living with rare disease.

Read John’s story and download his song “Hey Brother.”

About the #RAREis Playlist

#RAREis Playlist was launched February 2018 in partnership with Sing Me a Story Foundation and Global Genes to elevate the stories of children living with rare diseases through song. Professional songwriters and musicians transform children’s personal journeys into songs through the #RAREis Playlist, a collection of almost 50 songs about stories of children living with rare diseases. Donations for each song download benefit Sing Me A Story Foundation and a nonprofit organization that supports the child’s rare disease.