-- The original song inspired by a creative story written by Leanor, a 7-year-old who lives with a rare pediatric cancer --
-- The Doug the Pug and #RAREis Playlist music video will premiere Feb. 17 on the Doug the Pug and the Doug the Pug Foundation Instagram pages --
Horizon Therapeutics plc (Nasdaq: HZNP) today announced a new partnership with nonprofits the Doug the Pug Foundation and Sing Me A Story Foundation through the company’s #RAREis Playlist program, to amplify the voices of children with rare diseases through storytelling and song.
According to the National Institutes of Health, a rare disease is any condition affecting fewer than 200,000 people, and of the about 7,000 known rare diseases, about 80% are genetic and about half appear in children. The #RAREis program provides individuals and families impacted by rare diseases access to resources that connect, inform and educate as they navigate their daily lives.
Leanor was selected by the Doug the Pug Foundation – which works to bring joy and needed support to children and their families battling cancer and other life-threatening illnesses – to virtually meet Doug the Pug and his humans, Leslie Mosier and Rob Chianelli. As songwriters themselves, Leslie and Rob used Leanor’s story as inspiration to create a special song through the #RAREis Playlist, “The Quest for the Golden Pearl.”
Diagnosed with Ewing sarcoma, a rare form of bone cancer that affects only 200 kids and young adults in the United States annually, Leanor has gone through aggressive treatments including chemotherapy. In 2020, she had surgery to remove the tumor and her left tibia, and had her right fibula relocated as an autograft at the Peyton Manning Children's Hospital. Today, Leanor is doing well after successful treatment.
“For Leanor to have this opportunity to see a story she and her sister wrote come to life by her favorite pug celebrity is magical,” said Aimee F., Leanor’s mother. “Her story is just like her, full of imagination and a bright light of happiness.”
The Doug the Pug Foundation is focused on bringing joy and emotional support to children battling life-threatening illnesses, outside of their treatment.
“Doug has a special way of putting a smile on people’s faces and that’s why we launched the Foundation because bringing joy to kids like Leanor, and allowing them to explore their own creativity, is so special,” said Leslie Mosier, songwriter and human to Doug the Pug.
“Leanor’s song featured in a unique social media challenge and the partnership with the Doug the Pug Foundation provides a platform to give voice to children living with rare diseases,” said Matt Flesch, vice president, communications and patient advocacy, Horizon. “Since 2017, Horizon’s #RAREis program has grown from a social media campaign to a multifaceted platform elevating stories like Leanor’s through personalized, creative formats like this song.”
The #RAREis Playlist program, founded by Horizon in partnership with Sing Me A Story in 2018, features more than 50 stories written by children impacted by rare diseases and accompanying songs created by musical artists.
To hear Leanor’s story, visit the RAREisPlaylist.com website. #RAREis will launch the full music video on Feb. 17 and will kick-off a special social media challenge on Feb. 20 with Leanor’s song from Doug the Pug’s Instagram page @itsdougthepug and the Doug the Pug Foundation’s Instagram page @dougthepugfoundation.
In February of 2017, Horizon launched the #RAREis program aimed at elevating the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources for the rare disease community. The program is anchored by an Instagram page and website that showcases photos and stories of people touched by rare disease and captures elements of their patient, caregiver or advocate experience. To learn more, visit the #RAREis Instagram and Facebook page and visit the website at www.RAREisCommunity.com.
Horizon is focused on the discovery, development and commercialization of medicines that address critical needs for people impacted by rare, autoimmune and severe inflammatory diseases. Our pipeline is purposeful: We apply scientific expertise and courage to bring clinically meaningful therapies to patients. We believe science and compassion must work together to transform lives. For more information on how we go to incredible lengths to impact lives, visit www.horizontherapeutics.com and follow us on Twitter, LinkedIn, Instagram and Facebook.
About Doug the Pug Foundation
The Doug the Pug Foundation (501c3 tax exempt) works to bring joy and needed support outside of treatment to children and their families battling cancer and other life-threatening illnesses. Doug the Pug Foundation works with individuals and non-profits to identify a need and creates lifegiving campaigns to alleviate financial burdens and bring smiles to those who can best benefit.
About The Sing Me A Story Foundation
Sing Me a Story creates songs for deserving families in need based on the imaginative stories of their children. To learn more – and hear songs created as part of this process – visit SingMeAStory.org. Follow @SingMeAStory on social media.