Marquette's College of Health Sciences to host discussion on rare diseases

February 13, 2018

Speakers to include parents and people living with rare diseases on the eve of the international Rare Disease Day.

MILWAUKEE — February 28 marks the 11th annual Rare Disease Day, a day of recognition of the 350 million people around the world who are impacted by 7,000 life-threatening rare diseases, most of which have little to no options for treatment. Half of these people are children.

The College of Health Science's upcoming Marquette Presents series welcomes Harmony 4 Hope, a nonprofit charity organization that aims to fuel scientific discovery and uplift affected children and families through music and music therapy.

The free, public event will be held on Tuesday, Feb. 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. Milwaukee-based musician Trapper Schoepp, a rare disease advocate and Harmony 4 Hope musical ambassador, will perform prior to the discussion which begins at 6 p.m.

"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. "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."

Cullinan will moderate the discussion. Presenters include Adrienne Ott Provost and Sarah Smith, two Marquette alumnae and parents who will share their families' individual and deeply personal experiences with rare disease, and Peter Dankelson, a young man who was diagnosed at birth with Oculo-Auriculo-Vertebral Syndrome, a series of rare disorders that affect the eyes, ears and spine.

Complimentary refreshments including hors d'oeuvres will be provided. Free parking is also available in the 16th Street parking structure, located between Wisconsin Ave. and Wells Street. Registration is required and available online at mupresentsraredisease.eventbrite.com.

Each of the speakers and Schoepp are available for interview on-site prior to the discussion at 6 p.m. Please contact Jesse lee, senior communication specialist for the College of Health Sciences, at (414) 550-4116 to arrange an interview.

Marquette Presents is a forum series developed by the College of Health Sciences at Marquette University to focus on issues of community health. Previous forums in the series focused on depression, sports-related concussion, obesity, ebola and spinal cord injury.