BOSTON, May 3, 2017 /PRNewswire/ -- In partnership with the Williams Syndrome Association (WSA), Boston
The inaugural Boston walk will aim to raise funds for critical, lifesaving research for Williams syndrome and will take place during Williams Syndrome Awareness Month, a time when thousands of people across the country will be walking to raise awareness of this genetic condition, which remains virtually unknown to the general public, educators and many doctors.
Families travel from all areas of the country and internationally to have their children seen by the Williams syndrome specialists at Boston hospitals, including Massachusetts General Hospital and Boston Children's Hospital. Additionally, the WSA will be partnering with the Kiev Foundation to fund a critical three-year study at Boston Children's Hospital on the cardiovascular issues associated with Williams syndrome.
"Boston is at the heart of much of our early knowledge of the medical and behavioral aspects of Williams syndrome, as well as the future of research on Williams syndrome," says Terry Monkaba, the executive director of the Williams Syndrome Association. "Boston is both the past and the future of Williams syndrome, and we are thrilled this city will be hosting this walk for the very first time."
Throughout Williams Syndrome Awareness Month, various Walks for Williams across the country will be paying special tribute to Jonathan Martinez, the nine-year-old boy with Williams syndrome who was killed in his San Bernardino, California, classroom in April. In the wake of his tragic passing, the Martinez family believes that increased awareness of Williams syndrome nationwide would be the best possible legacy for Jonathan.
"We hope hosting the walk in Boston this year will allow the medical staff and other supporters in the area the opportunity to enjoy a fun day at the zoo with some of the children and adults whose lives they impact," said Rebekah Pagis, Newton resident and mother to three-year-old Joachim, who has Williams syndrome. "The walk will give the New England Williams syndrome community a place to gather for a good cause and pay tribute to the Martinez family's wishes."
For more information on the walk or to donate, please visit williams-syndrome.org/2017-boston-walk-williams.
About the Williams Syndrome Association The Williams Syndrome Association (williams-syndrome.org) is a nonprofit organization that strives to enrich the lives of individuals and families affected by Williams syndrome and similar conditions through support, research and education.
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SOURCE Williams Syndrome Association
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