Rare Disease Report

Marquette University and Harmony 4 Hope Honor Rare Disease Day

FEBRUARY 14, 2018
Kaitlynn Ely
On February 27, Marquette University’s College of Health Sciences will host a discussion led by Harmony 4 Hope and other rare disease advocates in honor of rare disease day.

Harmony 4 Hope is a nonprofit charity organization that empowers researchers to make scientific discoveries while advocating for music therapy as a way to uplift affected children and their families. The organization supports rare disease families through their Rare Storytellers and Rock the Research initiatives, which bring music and education to patients and their loved ones.

In honor of Rare Disease Day, Harmony 4 Hope creates an annual Song Survey which becomes a new playlist available on Spotify. The survey is available through the month of February and the playlist is released on February 28 of each year.

Songs from the 2017 playlist include Can’t Stop the Feeling! by Justin Timberlake, Brave by Sara Bareilles, and I Won’t Back Down by Tom Petty.
“A staggering number of people are affected by rare diseases,” said Dr. William Cullinan, dean of the College of Health Sciences and director of the Integrative Neuroscience Research Center at Marquette, in a press release. “We hope to highlight the good work of Harmony 4 Hope and their efforts to raise awareness of these diseases and of those affected by them.”

The discussion will be facilitated by Dr. Cullinan and presenters will include two Marquette alumnae and parents, Adrienne Ott Provost and Sarah Smith, who will share their personal and moving experiences dealing with rare disease. Peter Dankelson, a young man diagnosed at birth with Oculo-Auriculo-Vertebral Syndrome, a progressive rare disease that affects the eyes, ears and spine.

Trapper Schoepp, a Milwaukee-based musician, rare disease advocate, and Harmony 4 Hope musical ambassador, will perform before the discussion.
The event will be held on Tuesday, February 27, the eve of Rare Disease Day. Doors open at 5:30 p.m. in the Monaghan Ballroom on the third-floor of the Alumni Memorial Union, 1442 W. Wisconsin Ave., Milwaukee. The discussion will begin at 6:00 p.m. Complimentary refreshments will be provided at the event.

The discussion is free of charge and is open to the public. Note that registration is required and is available online at mupresentsraredisease.eventbrite.com.

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