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Repurposing Music and Medicine to Deliver Hope on Rare Disease Day 2014

In recognition of the 7th Annual Rare Disease Day on February 28, two Chicago-area nonprofit organizations are joining forces by repurposing music and medicine to raise awareness of rare diseases through a grassroots campaign to help children.


PRLog (Press Release) - Feb. 12, 2014 - CHICAGO -- Nine year-old Bridget Kennicott from Barrington, IL suffers from Batten disease, a fatal, inherited rare disorder of the nervous system that typically begins in childhood and has no cure. It’s one of the 7,000 rare diseases, defined in the U.S. as a disease affecting fewer than 200,000 people. Her parents, David and Sara Kennicott, started the Hope4Bridget Fund at Cures Within Reach (http://www.cureswithinreach.org/) to find a cure for Batten disease.

With the heartfelt mission of using music as a vehicle to comfort, create community and contribute to rare disease research, Harmony 4 Hope (http://www.harmony4hope.org/) founder Kerry Morgan Hughes is organizing a collection of iTunes gift cards and used iPods, Nanos and shuffles, which will be repurposed through distribution to children battling a rare disease. Hughes is a Chicago native and close friend of Bridget’s mother, Sara. The collection will kick-off with a “Play This Forward” live music event, featuring the music of Karl Vincent Roth, an alumnus of Barrington School District and former 4th grade student of Hughes.  This event will be held at North Barrington School located at 310 North Highway 59 in North Barrington, IL, on Friday, February 21, from 1:00 to 3:00 pm.

"From the moment of Bridget's diagnosis in 2009, I’ve felt compelled to contribute to this cause in some way,” noted Hughes. “Music has always moved my soul; and so I looked for a way to unite my passion for music with a greater purpose to help Bridget and other kids like her. I’m happy to be teaming up with Cures Within Reach to raise awareness for Bridget and families battling a rare disease.”

Cures Within Reach is a 501(c)3 non-profit organization based in Skokie, IL, whose mission is to save lives through research to repurpose existing drugs and devices to find effective treatments for diseases affecting underserved patient populations. This research model is much faster and less expensive than what is used to conduct traditional drug research. More than $200,000 has been committed to research projects for a treatment or cure for Batten disease working with Cures Within Reach through its Hope4Bridget Fund (http://www.cureswithinreach.org/about-us/partnering-organ...), dedicated to Bridget Kennicott, and Noah’s Hope Fund (http://www.cureswithinreach.org/about-us/partnering-organ...), dedicated to two siblings with Batten disease.

“Donations to these funds are supporting research projects to repurpose existing drugs to find a treatment or cure, and to find blood biomarkers for this disease as a foundation for evaluating treatment efficacy, as well as creating an online patient registry for clinicians, patients and caregivers,” said Cures Within Reach President and Chief Science Officer Dr. Bruce Bloom.

Much of this research is funded in conjunction with the Batten Disease Support and Research Association, and other small non-profits joining in the battle against Batten disease.

Media Contact:

Chuck Strand
Cures Within Reach

Chuck Strand

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Source:Cures Within Reach
City/Town:Chicago - Illinois - United States
Industry:Health, Non-profit
Tags:rare disease, philanthropy, Music, recycling
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