Kerry Morgan Hughes is the founder and president of Harmony 4 Hope, a non-profit organization that brings music to hospitalized children with rare diseases. As the president of Harmony 4 Hope, Kerry’s mission is to mobilize the community to become aware of what it’s like to live with a rare disease, and to support funding that will contribute to scientific research and discoveries that will help people with rare diseases. Kerry has organized several creative initiatives to bring music to hospitalized children, including creating an uplifting music playlists, collecting donations of iTunes giftcards, and hosting live-music events. Harmony 4 Hope offers plenty of opportunities to volunteer and donate to the critical cause of raising funds for rare disease research. Recently, #ISCblog interviewed Kerry to learn more about her work at Harmony 4 Hope.
Where do you work, and what do you do there?
I am the Founder and President of Harmony 4 Hope. Through music, our mission is to uplift children, mobilize community and contribute to external scientific discoveries in Rare Disease. As the proprietor of this charitable organization, I wear several hats. I do everything from book keeping to social media. I am definitely on a huge learning curve as I navigate my way through the non-profit world. I have a hand-selected team of advisors that supports me and contributes tremendously to the vision and work of H4H.
Describe your typical workday.
A typical workday for me consists of communication, whether that be by e-mail, phone, or face-to-face meetings. I am extremely inspired to meet those impacted by Rare Diseases, and very interested in creating collaborations with my fellow Rare Disease activists to unify the community for this critical cause.
What influenced you to launch Harmony 4 Hope?
When Bridget, the daughter of my good friend, was diagnosed with Late Infantile Neuronal Ceroid Lipofuscinoses (LINCL), more commonly known as Batten Disease, I felt called to action.
Batten Disease is relatively rare, occurring in an estimated 2 to 4 of every 100,000 births in the United States. The disease has been identified worldwide. Over time, affected children suffer mental impairment, seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease/NCL become blind, bedridden, and unable to communicate and it is presently always fatal. Batten Disease is neither contagious nor preventable. Today, Bridget is 11 years old. Bridget is the inspiration of H4H.
Sadly, Batten Disease is just ONE of 7,000 Rare Diseases collectively impacting 350,000,000 people worldwide. Half of these people are children and only 200 of these diseases currently have FDA-approved treatments. Individually, these diseases are rare. Collectively, they impact 1 in 10 Americans, which is not really so rare at all.
The thousands of unheard stories behind these devastating statistics are what influenced me to launch Harmony 4 Hope in 2014. Through music, people come together around one idea at the same time. Music creates a common shared experience that we all love.
I am a devoted alumna of Marquette University where I know my search for social justice has its’ roots. I am grateful for my all-encompassing educational experience at Marquette. I have always been passionate about working with and for children and families. I am a former educator with a Master’s Degree in Reading Instruction. After several years of teaching in the classroom and private tutoring, my husband, Dave, and I started our family. I am a devoted mother to Nate (16), Olivia (13), and Lily (8) – our Golden Retriever and my ‘branch’ manager at H4H.
What is a rare disease? How rare does a disease have to be in order to be considered rare?
In the U.S. a disease is considered “rare” if it impacts fewer than 200,000 people. 80% of Rare Diseases are genetic. 50% of people affected are children. 30% of children with a Rare Disease will not live to see their fifth birthday. And 35% of deaths in the first year of life are attributed to a Rare Disease.*
*statistics courtesy of Global Genes
What rare diseases does your organization focus on?
Although supporting Batten Disease research is a priority to our organization, to date, our programs have supported many others, including Rett Syndrome, Alternating Hemiplegia of Childhood, Alpha I, Epidermolysis Bullosa, Joubert Syndrome & Noonan Syndrome.
What is it like to live with a rare disease?
On average, the lifespan of a person with a rare disease diagnosis is 8 years.
There is a tremendous amount of isolation that comes with this type of diagnosis.
In Bridget’s case, she was developing normally until the onset of seizures which prompted the odyssey for a diagnosis. Over time, children with Batten Disease regress, losing mobility, speech, vision and the ability to eat. The disease slowly robs them of life.
Please take a moment to read about Bridget’s devastating diagnosis at http://www.hope4bridget.com.
EDITORS’ NOTE: Laboratories are working on research to cure Batten Disease as well as other Rare Diseases right now. To learn more about Batten Disease and the genetics behind it, take a look at the Batten Disease Fact Sheet, compiled by the National Institute of Neurological Disorders and Stroke (NINDS). NINDS is a division of the National Institutes of Health (NIH), which funds much of the biomedical research conducted today in the United States.
Why did you choose to use music to help improve the lives of ill children? How does music uplift these children? Do you use certain types of music or certain instruments?
Although I am not musically inclined, I am deeply moved by music and song writing. I believe that songs tell stories that help us identify with others. I believe that music is one way for many non-communicative children to stay connected to the world around them. Music is a powerful medium.
H4H uses recorded music to deliver our mission. In a social media campaign to bring people to our mission for Rare Disease, we are currently conducting a song survey to identify the songs that embody HOPE and INSPIRATION. These song requests from our followers will be dedicated through our playlist, to children facing the challenges of Rare Disease. The Harmony 4 Hope Playlist is part of our Rockstar Care Packages. We want children, families and caregivers to know that we care. We hope that music will provide a little respite in a difficult day.
EDITORS’ NOTE: According to an article by the American Psychological Association (APA), listening to music can have profound effects on reducing stress and treating pain. Though music likely could not directly cure a rare disease that is caused by a genetic mutation, it is important to recognize that music can still bring comfort, joy, and calm to patients and family members of patients afflicted with rare diseases. Read the APA’s article here.
Do you bring music to the kids, or the kids to the music? Do you bring music to hospital rooms?
Most recently, through our Play This Forward Program we have been bringing the music to the kids. Last year our Play This Forward Program was hosted by our friends at Sharing Notes, another Chicago non-profit delivering music to hospitalized children. As a result of this collaboration, H4H was able to deliver over 30 iPods and hundreds of dollars in iTunes gift cards to Chicago’s La Rabida Children’s Hospital in recognition of Rare Disease Day. La Rabida specializes in treating children with Sickle Cell Anemia – a rare blood disorder. These gifts of music are housed at La Rabida for children to enjoy.
In the past, we have also created adult-centered, HIGH-ENERGY, LIVE music events to bring the community together, deliver the message and raise research dollars for scientific discoveries in Rare Disease. Rush University Medical Center has been a recipient of these fundraising efforts.
What is a Rare Rockstar Care Package?
Our newly introduced Rockstar Care Packages are delivered to the children and families we are serving. We generally distribute these gifts of music to children at annual family conferences. The H4H Rockstar Care Packages includes The Harmony 4 Hope Playlist, created annually through our short survey, an iTunes gift card and a few other Rockstar surprises. The purpose is to uplift children and deliver a little hope in the form of music.
How can interested readers get involved with Harmony 4 Hope’s initiative to promote research, awareness, and education about rare diseases?
We have several very specific ways for folks to help us grow our mission!
Play This Forward: We are in need of community organizations, (schools, churches, synagogues, youth groups, etc) to host our Play This Forward Campaign. This campaign is PLUG and PLAY and simply calls for the collection of iTunes Gift Cards – think of it like a food drive- instead we round up iTunes gift cards to fill care packages for kids.
Rare Storytellers: We are seeking Rare Disease patients or parent advocates to join our growing team of Rare Storytellers. Our Rare Storytellers join H4H biannually at Northwestern Feinberg School of Medicine to share their stories with aspiring doctors. Education is KEY!
Rock The Research: LIVE music events supporting our multifaceted mission for Rare Disease. We are currently seeking corporate or small business sponsorships for our 2017 high energy LIVE music event to turn up the volume and shine the spotlight on Rare Disease.
Stay Informed: Join our Newsletter.
Shape the H4H Playlist: take our short song survey on or before 2/29/16.
For internship information please contact Kerry Hughes at firstname.lastname@example.org.
Follow Dana on Twitter @dhsimmons1 for updates on her research, ISC articles, and neuroscience-based art.