Harmony 4 Hope and Orchard Therapeutics Band Together to Rock Rare Rare Disease
June 1, 2020Rocking the Research for Kabuki Syndrome
November 23, 2020
Harmony 4 Hope and Exicure, Inc. teamed up for an uplifting afternoon of storytelling and music to learn more about rare diseases from the personal perspectives of rare disease champions, Trapper Schoepp and Dave Kennicott. Watch the recording below!
Thursday, October 15
12:00 p.m. – 1:00 p.m.
Featured Speakers:
Trapper Schoepp
Rare Storyteller & H4H Musical Ambassador
As a Musical Ambassador for Harmony 4 Hope, Trapper Schoepp merges his storytelling, musicianship and decade long battle with chronic back pain. He offers a voice of solace in the ongoing struggles faced by those suffering from rare diseases. Schoepp is honored to raise awareness and funds with Harmony 4 Hope to help combat rare diseases worldwide.
Dave Kennicott
Rare Storyteller, Late Infantile Batten Disease
Dave and his wife Sara founded the Hope 4 Bridget Foundation in honor of their daughter, Bridget Rose. After learning there were no treatments, cure and very little funding directed toward this fatal childhood disease, they decided to make it their mission as parents. The mission of the Hope 4 Bridget Foundation is to support innovative research, develop early detection methods, advance treatment techniques, and ultimately find a cure for Batten disease. Although their effort to find a cure is too late for Bridget, they forge ahead to fight for other children like her. Dave and his family will continue to be proactive until the disease is stopped.
Special Thanks to Our Partners
Harmony 4 Hope (H4H) is a nonprofit charity organization founded by Marquette alumna, Kerry Morgan Hughes (Arts ’93). Harnessing the power of music the mission of H4H is to fuel scientific discoveries in Rare Disease, educate future physicians and healthcare providers and uplift affected children with gifts of music and music therapy. Learn more at harmony4hope.org.