Folk Choir Premiers “Hope’s Song.” Discover a 14 year old fighting a disease only 50 worldwide have.
Watch and listen Friday, October 11, 2024, at 12:45pm EDT, to the debut of this majestic new choral piece about not giving up. Hope Kern is the young girl who has battled through 35 surgeries since birth to fight Shprintzen-Goldberg, the devastating syndrome that attacks the Cranium, Abdomen, Skeletal System, Lungs, Connective Tissues, and more. Across the planet, only 50 kids have SGS. Check back for the livestream link to see the premiere of Hope’s documentary and a performance by the Notre Dame Folk Choir, who will present this uplifting piece live as part of the Patient Advocacy Summit at the University of Notre Dame.
“On October 11th, this inspirational song and music video, inspired by Hope’s story and written in collaboration with four students from the Folk Choir, will be released on the Sing Me A Story Foundation website and everywhere you stream music. Visit https:/
“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 provided a roadmap for the creation and production of “Hope’s Song”, which 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.
A recording of Hope’s Song will be 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.
Visit these websites for more information and FAQs:
Patient Advocacy Initiative
Boler-Parseghian Center For Rare Diseases
Sing Me A Story Foundation
Originally published by folkchoir.nd.edu on October 04, 2024.
atLatest Research
- Notre Dame Lead Innovation Team partners with local WIC program to identify, prevent lead poisoning in childrenB.A.B.E. store “shoppers” now have something new to help their families: free lead screening kits offered by the University of Notre Dame’s Lead Innovation Team.
- Notre Dame Welcomes Ninth Cohort of Warrior-Scholars for Transformative Academic JourneyNOTRE DAME, IN – The University of Notre Dame recently concluded its ninth successful Warrior-Scholar Project (WSP) boot camp, hosting 34 dedicated Warrior-Scholars from June 21st to 28th. This intensive, week-long academic residency provided transitioning service members and veterans…
- Entrepreneurship and Empowerment in South Africa study abroad program celebrates 25 yearsThis year, the Entrepreneurship and Empowerment in South Africa (EESA) program marked its 25th year of operation. EESA is a six-week summer study abroad program that enables students to help historically…
- Vatican honors Martin and Carmel Naughton with papal awardCarmel…
- Brain tumor growth patterns may help inform patient care managementAssistant Professor Meenal Datta (University of Notre Dame/Wes Evard) A team of researchers from the University of Notre Dame, Harvard Medical School/Massachusetts General Hospital, and Boston University has developed a technique for measuring a brain tumor’s mechanical force and a new model to estimate how much brain tissue a patient has lost.
- Biseach Symposium Strengthens Cancer Research Partnership Between Notre Dame and University of Galway…