The 7th Annual World Rare Disease Day is February 28, 2014. Harmony 4 Hope(TM) Founder, Kerry Hughes, is engaging community youth in delivering a little harmony and hope for children who face the uncertainty and isolation of a rare disease diagnosis.
The first annual Play This Forward (TM) Campaign has been created to raise awareness for rare disease. There are 7,000 rare diseases that impact 350,000,000 people worldwide. Hughes’ work is inspired by close friend, Bridget Kennicott of Barrington, who was diagnosed with Batten disease in 2009; a fatal, rare & genetic disorder that currently has no cure. Hughes says “Where there is music, there is unity and where there is unity, there is HOPE.”
Play This Forward (TM) is a unique initiative uniting community youth in compassionate and meaningful outreach, while simultaneously raising awareness for the prevalence of rare disease.
“With the rapidly changing technology of today, we are collecting unwanted nanos and shuffles, along with iTunes gift cards.” says Hughes. “These reengineered and personalized devices will be delivered to a few very special children as we pilot this program and aim for sustainability in the years to come.”