Harmony 4 Hope Rare Storytellers 2017 Fall Series Continues to Connect Parents of Children Living wi

FOR IMMEDIATE RELEASE For additional information, contact:

Kerry Morgan Hughes

Founder, Harmony 4 Hope
http://www.harmony4hope.org
kerry.hughes@harmony4hope.org Harmony 4 Hope Rare Storytellers 2017 Fall Series Continues to Connect Parents of

Children Living with Rare Diseases with Medical Students Lake Zurich, IL (September 28, 2017)—The Harmony 4 Hope Rare Storytellers series will

continue to give voice to rare disease patients and parent advocates at Northwestern University

Feinberg School of Medicine on Tuesday, October 3 and Rush University Medical Center on

Friday, October 13. Joining the program for the first time, from Bloomington, IL are Todd and Corin Chapman,

speaking on behalf of their son, Max, 3, who was diagnosed at 14 months with Peroxisomal

Biogenesis Disorder (PBD). PBD, also known as Zellweger Spectrum Disorder (ZSD). ZSD

affects approximately 1 out of 50,000 children. This degenerative disease affects all parts of

Max’s body, with notable impacts to his vision, hearing, liver, muscle and bone strength, and

general physical development. Most children with this disorder do not survive past the age of 10

and there is currently no cure or treatment available for the disorder. Chicago resident Adrienne Provost, a parent advocate, will return to the Storyteller series to

share the story of her daughter, Caroline, 12, with Feinberg medical students. Caroline is living

with epidermolysis bullosa—a rare disease that causes the skin to tear away or form large blisters

at the slightest pressure. Provost will share Caroline’s journey from diagnosis and to daily life as

a “butterfly kid” with skin as delicate as a butterfly wing. “At Harmony 4 Hope we believe all the best songs start with story. Adrienne’s story continues to

amplify to the voices of the rare disease community with the next generation of medical

professionals who will be on the front lines of treatment and in researching for cures,” says

Kerry Morgan Hughes, founder of Harmony 4 Hope, a not for profit 501c3 dedicated to using

music to fuel scientific discoveries in rare disease, educate medical students and uplift children.

Also joining the tour are Sara Kennicott and Stephen Mack who will speak to the Rush medical

students. Kennicott, a parent advocate for Batten disease, will also be giving an encore

performance. Sadly, Kennicott lost her daughter Bridget, 12, to the disease in February but she

continues to work toward a cure. Bridget Kennicott was also the inspiration behind the creation of Harmony 4 Hope. The Rush medical students will also hear from Harmony 4 Hope alum Dr. Stephen Mack, a

Dissertation Writing Expert and Adjunct Professor for the National Center for Academic and

Dissertation Excellence at The Chicago School of Professional Psychology. Mack is also the

father of Isabella, 13, who lives with Joubert syndrome— a rare genetic disorder causing abnormal brain development and characterized by decreased muscle tone, difficulties with

coordination and intellectual disability. “Although their struggles are real and difficult,” says Hughes, “these parents ultimately share

stories of hope and answer students’ poignant questions.”

The Rare Storyteller event at Northwestern University Feinberg School of Medicine is sponsored

by Retrophin, Inc. About Harmony 4 Hope

Harmony 4 Hope is a not for profit 501c3 tax exempt corporation founded in 2014 by Kerry

Morgan Hughes for the purpose of using music to fuel scientific discoveries in Rare Disease,

educate medical students and uplift children. The Harmony 4 Hope Team is committed to growing these efforts, identifying additional

opportunities that align with our mission, and building a sustainable charitable organization that

is recognized as a leader in supporting Rare Disease Research and Awareness through the Power

of Music. For more information, go to harmony4hope.org. #RareStorytellers