by Andrew DeCanniere
Last week, an e-mail from Allegra Montanari, Founder & Director of the Chicago-based Sharing Notes, landed in my inbox, telling me of another wonderful local organization, Harmony 4 Hope, and their upcoming “Play This Forward” initiative, which is to benefit the children of La Rabida Children’s Hospital. Wanting to know more about Harmony 4 Hope and “Play This Forward,” I reached out to the organization's President and Founder, Kerry Hughes. Read on to see what she had to say…. and be sure to check out my interview with Allegra Montanari from earlier this year to learn more about Sharing Notes.
UR Chicago Magazine: For those who aren’t familiar with your organization, what is Harmony 4 Hope?
Kerry Hughes: Harmony 4 Hope is a Chicago-based charitable organization that I founded in 2014. Through the power of music we build community and raise funds for drug discovery in the Rare Disease space.
UR: How did it come about? When did you decide to start the organization, and what or who was your inspiration for starting the organization in the first place?
KH: Harmony 4 Hope is inspired by young friend, Bridget Kennicott, who was diagnosed in 2009 with a rare, genetic disorder known as Batten Disease. The disease currently has no cure and always ends in premature death around the age of twelve. Today, Bridget is ten years old.
Batten Disease is ONE of 7,000 Rare Diseases that collectively impact 350 MILLION people worldwide. To date, 95% of Rare Diseases have NOT ONE single FDA approved drug treatment. The personal stories behind these devastating statistics fuel the mission of Harmony 4 Hope. Like so many, Bridget loves music; music naturally became the platform of our foundation.
UR: How does the program work? Are you currently looking for volunteers? How can people get involved with your organization?
KH: In the United States, a condition is considered “rare” if it affects fewer than 200,000 people combined in a particular rare disease group. Play This Forward is our signature World Rare Disease Day Initiative. World Rare Disease Day is recognized annually on February 28th. The aim of our Play This Forward initiative is to actively engage the greater Chicagoland area for this critical cause.
The objective of Play This Forward is threefold. First, to deliver the comforting and uplifting power of music to children and families impacted by the devastation and isolation that oftentimes accompanies such a diagnosis. Second, to repurpose older and unwanted musical playback devices. Third, to heighten awareness of rare disease by engaging community in meaningful and practical outreach for this critical cause. People can get involved in many ways, including by hosting our Play This Forward initiative at their place of business, school, Church, etc. Making a financial donation to Harmony 4 Hope supports Play This Forward, delivering recorded music to children with Rare Disease; and Rock the Research, LIVE music benefits that raise funds for drug discovery in the Rate Disease space.
In preparation for the 2015 launch of our Rock the Research Annual Concert Benefit, we are seeking early sponsorship commitment from corporate and small businesses, donations in kind & donation of services.
UR: You’ve recently partnered with Sharing Notes for Play This Forward, which runs from December 1st through December 12th. Can you talk a little bit about the initiative? How did it come about? What are the goals of the initiative?
KH: After learning about our foundation through social media, Allegra Montanari, founder of Sharing Notes, approached me to learn more about our musical mission for Rare Disease. Allegra and I quickly learned that Harmony 4 Hope and Sharing Notes operate under the common theory that music is not only uplifting and comforting, but music also holds the power to unite people. Our kindred belief in the power of music is what brought us together for this highly unique initiative, which is not only mutually beneficial to the growth of both of our missions, but also to sick children right here in “Sweet Home Chicago.” Our team is absolutely delighted to be working with Allegra and Sharing Notes for the purpose of delivering the gift of music to sick children. I think this is just the beginning of future musical endeavors between Harmony 4 Hope and Sharing Notes. I am excited to see what lies further up the road!
UR: Are there any other upcoming events or similar intiatives?
KH: The musical playback devices collected from Sharing Notes through this particular drive, will be repurposed by our team of youth volunteers and loaded with a Sharing Notes Playlist & The 2015 Harmony 4 Hope Playlist (comprised of popular song requests from our online Rare Disease community). The devices will be gifted to La Rabida Children’s Hospital in a ceremonial event to be held at La Rabida on Friday, February 27 in recognition of World Rare Disease Day 2015.
UR: Apart from Play This Forward, if someone would like to contribute to your organization monetarily, how can they make a contribution? Where can they go to donate?
KH: To learn more or to make a donation to Harmony 4 Hope, they can go to www.harmony4hope.org, or TUNE IN with us on Facebook and on Twitter.
Drop off locations for the Play This Forward Collection Drive, which runs December 1st through December 12th, include:
Chicago College of Performing Arts
430 S. Michigan Ave.
Chicago, IL 60605
La Rabida Children’s Hospital
6501 Promontory Drive
(ask for the Child Life Department)
or mail donations to:
Harmony 4 Hope / Sharing Notes
830 West Route 22, #44
Lake Zurich, IL 60047
Kerry Hughes is the President and Founder of Harmony 4 Hope. To learn more about Harmony 4 Hope, visit their website at www.harmony4hope.org. You can also find them on Facebook and on Twitter .
Allegra Montanari is a cellist and the Founder and Director of Sharing Notes. She lives in Chicago. You can read my interview with Allegra here. Additional information about Sharing Notes may be found on their website, www.sharing-notes.org. You can also find Sharing Notes on Facebook and on Twitter.
This interview originally appeared in Chicago Splash Magazine.