Awareness Walks “#KFSummertimeStroll” Take Place Across Country For Klippel-Feil Syndrome
August 5, 2015
As with most of the 30 million Americans scattered across the country who suffer from one of 7,000 known rare diseases, it is difficult for patients with Klippel-Feil Syndrome – a rare spinal condition – to get together for an awareness event in one location.
That is, until one grassroots advocacy organization, Klippel-Feil Syndrome Freedom, decided to get creative. In honor of the third annual KFS Awareness Day on August 6th, the organization founded by Illinois resident Sharon Rose Nissley, asked patients to organize mini-walks in neighborhoods across the globe. The event, known as the #KFSummertime Stroll takes place on or near August 6th.
KFS occurs in 1 out of every 42,000 births. It primarily affects the bones in the neck, but it also may involve abnormalities in organs like the heart, lungs or kidneys. Klippel-Feil Syndrome is musculoskeletal in nature and affects the spine. The severity of symptoms varies widely between patients, ranging from nonexistent to extremely debilitating. Because the disorder is mainly structural and is so rare, most patients struggle to find effective treatment.
“Although the walks will take place in various locations around the world, our cause is the same,” says 44-year -old Sharon Nissley “We want to increase awareness about this condition among the general population and the medical community. By doing so, we hope to help encourage further research and improve viable treatment options. Additionally, most people and families have never met another person with KFS who shares similar issues and similarities. This event gives our community the opportunity to meet and advocate for our cause together. ”
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