A few months ago, a five-year old boy named Isaac took his first ride on his own bike. It was a signifying moment—full of happiness, full of promise. It was also the gift of a lifetime, organized through the ACMG Foundation for Genetic and Genomic Medicine and sponsored by Shire.
It was all part of the annual Day of Caring, which occurred this year on March 28th. The event took place on the final day of the ACMG’s 2014 Annual Clinical Genetics Meeting and Conference, a key event for genetics professionals from around the world. The bike itself was one of close to three-dozen specially designed vehicles given to children with a variety of rare diseases.
“For us at Shire, it’s a great privilege to watch these young people be presented with a new bike—a first bike, in most instances.”
Carrie Burke, US Alliance Development and Public Affairs Lead
“Each year the ACMG picks a series of rare diseases and then arranges for bikes to be made for and delivered to some of the children who have been challenged by their conditions,” says Carrie Burke, US Alliance Development and Public Affairs Lead. “For us at Shire, it’s a great privilege to watch these young people be presented with a new bike—a first bike, in most instances. The joy in that moment is transcendent. This is the real reason we do what we do at Shire.”
This year, Shire sponsored the design and construction of ten different bikes for ten very different children. John Magee, Head of US Sales for Shire’s Rare Disease Business Unit, was given the honor of cutting the ribbon at the ceremony.
“Having and riding a bike is a right of passage in a kid’s life,” said Bruce R. Korf, MD, PhD, FACMG, and President of the ACMG Foundation.
“We’re happy we can make that possible.” Isaac’s own bike was designed to suit the smaller stature that is linked to his achondroplasia, a form of short-limbed dwarfism. As the younger brother of two older siblings, it was his chance, according to his parents, to join them in an activity he’d always watched from the sidelines.
“Your diligent work to make this day happen was such a blessing,” they wrote, asking that their gratitude be passed on to many, including those at Shire. “I know the time and effort to make something like this happen takes a large contribution from many people/organizations. I just wanted you to know how grateful we were and your and your teams’ efforts have not gone unnoticed. May you be able to continue your good works for the many special children across the country.”
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