Hope’s Song
Discover a 14 year old fighting a disease only 50 worldwide have. Watch and listen to the debut of “Hope’s Song,” a majestic new choral piece about not giving up from Sing Me A Story and the Notre Dame Folk Choir. Hope Kern is the young girl who has battled through 35 surgeries since birth to fight Shprintzen-Goldberg Syndrome, an extremely rare connective tissue disorder. Across the planet, only 50 kids have SGS.
This documentary and a performance by the Notre Dame Folk Choir premiered live as part of the Patient Advocacy Summit at the University of Notre Dame.
“Through all these outlets, everyone around the globe can personally meet Hope Kern—one of the gutsiest, most inspiring kids anyone can experience,” says Folk Choir director J.J. Wright. “The Patient Advocacy Initiative at Notre Dame introduced J.J. and his students to the story of Hope Kern and their creativity now brings us the gift of Hope’s hopes, her dreams, determination, and faith in God”, says Barbara Calhoun, Director of the Patient Advocacy Initiative, part of the Boler-Parseghian Center for Rare Diseases, a multi-decade mission of the University of Notre Dame. B-P unrelentingly drives to help inspire research and discover treatments for some of humankind’s most insidious medical syndromes. It is named, in part, to honor now-deceased Hall of Fame Notre Dame football coach, Ara Parseghian, who 25 years ago suffered from a different devastating disease than Hope’s. The “what tho the odds be great or small” trait of Notre Dame is the impetus of these three entities: Boler-Parseghian, The Patient Advocacy Initiative, and certainly the Notre Dame Folk Choir’s creative gift in support of Hope Kern.
Sing Me A Story Foundation has created over 1600 songs since 2012 and provided the road map for the creation and production of “Hope’s Song.” Each journey begins by learning of a child with a devastating condition, encouraging them and their families to write, draw, or both about their feelings, and then passing those expressions onto selected composers around the world to serve as creative inspiration.
“Hope’s Song” was composed by J.J. Wright and four Folk Choir members, Meg Beuter, ’24, A.J. Nelson, ’26, Claire Rademacher, ’24, and Joe Robuck, ’27. Hope’s Song was released on all streaming platforms on October 11, 2024, performed by the University of Notre Dame Folk Choir with soloists, Danielle Rose, ’02 and Emorja Roberson, ’17, ’22 D.M.A. Click here to learn more.
Sing Me A Story thanks Notre Dame’s Patient Advocacy Initiative and #RareIs by Amgen for funding this project. Video by Claire Capdevielle ’27 and Jim Morrissey ’71.
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