|Posted:||April 3, 2018 08:52 AM|
|From:||Representative Perry S. Warren and Rep. Marcy Toepel|
|To:||All House members|
|Subject:||RECIRCULATION (Rep. Toepel joined as prime sponsor): Resolution Designating June 4, 2018, as “Batten Disease Awareness Day”|
|In the near future, we will be introducing a resolution designating June 4, 2018, as “Batten Disease Awareness Day” in Pennsylvania.
Batten disease is a rare and fatal inherited disorder of the nervous system which typically begins in childhood. Symptoms of Batten disease can include vision problems, seizures and difficulties learning. The quality of life for those affected by Batten disease deteriorates over time, eventually leading to premature death. Unfortunately, there is no known cure for Batten disease and current treatments can only slow or delay certain symptoms.
Batten disease is difficult to diagnose due to its rarity, which often leads to additional stress and financial strain for families. We ask that our colleagues join us in co-sponsoring this resolution in order to show our support and encouragement for children afflicted with this disease and their families.
Introduced as HR915