|Posted:||March 28, 2019 09:54 AM|
|From:||Representative Marty Flynn|
|To:||All House members|
|Subject:||4p-/Wolf-Hirschhorn Syndrome Awareness Day – April 16, 2019|
|Wolf-Hirschhorn syndrome (WHS) is a rare chromosomal disorder caused by the deletion of genetic material. Cognitive and physical delays, often paired with clear facial characteristics and intellectual disabilities, are the most recognizable signs and symptoms associated with the disorder. Unfortunately, there is no cure and those diagnosed with WHS are often subject to poor life expectancies.
Research to prevent, detect, and treat WHS is crucial, as with all rare genetic conditions. Receiving a diagnosis like WHS can take an extreme physical and mental toll on the individual and their family. Increasing awareness through research and offering support to families navigating a WHS diagnosis is key in truly caring for our fellow Pennsylvanians. As such, I will be introducing a resolution designating April 16, 2019, as “4p-/Wolf-Hirschhorn Syndrome Awareness Day.”
Unfortunately, caring for an individual with a rare disorder or condition can be an incredibly isolating feeling for many families. That is why I urge my colleagues to join me in raising awareness of Wolf-Hirschhorn syndrome and offering Pennsylvanians with the disorder the support they need and deserve.
Introduced as HR225