House Adopts Toohil Resolution Designating June as ‘Cockayne Syndrome Awareness Month’ in Pennsylvania
HARRISBURG – A resolution sponsored by Rep. Tarah Toohil (R-Luzerne), designating June as “Cockayne Syndrome Awareness Month” in Pennsylvania, today was unanimously adopted by the House of Representatives.
According to
House Resolution 415, Cockayne Syndrome, or CS, is an extremely rare, and always fatal, genetic disorder that affects a small number of children worldwide. CS is characterized by short stature and an appearance of premature aging. Children with the disease have small heads, impaired nervous systems and sensitivity to sunlight.
“CS is a terrible disease and the impact it has on these children and their families is significant, both emotionally and economically,” said Toohil. “There currently is no specific treatment for CS. However, patients do benefit from physical, occupational, speech, vision and hearing therapies. I encourage Pennsylvania residents to learn more about CS so that the families affected by it find the social and medical support they need more easily.”
Toohil said information on Cockayne Syndrome and stories of young CS patients are available on the Share and Care Cockayne Syndrome Network website,
http://cockaynesyndrome.org.
For more information on Toohil and her legislative priorities, please visit
RepToohil.com or
Facebook.com/RepToohil.
Representative Tarah Toohil
116th District
Pennsylvania House of Representatives
Contact: Rep. Toohil’s Office
717.260.6136
RepToohil.com /
Facebook.com/RepToohil