|Posted:||October 4, 2019 10:03 AM|
|From:||Senator Ryan P. Aument|
|To:||All Senate members|
|Subject:||Resolution designating November 22, 2019 as “22q Awareness Day” in Pennsylvania|
|In the near future, I plan to introduce a resolution designating November 22, 2019 as “22q Awareness Day” in Pennsylvania.
The chromosome 22q11.2 Deletion or Duplication Syndromes are used to describe a number of similar clinical conditions, including DiGeorge syndrome, velocardiofacial syndrome, conotruncal anomaly face syndrome, Opitz G-BBB syndrome, and Cayler Cardiofacial syndrome.
The International 22q11.2 Foundation was founded in 2003 by parents of children of these little known genetic conditions in an effort to allow families from across the globe to directly access information on the condition, and connect families previously split by the differing diagnostic names.
International 22q11.2 Foundation programs and resources have served more than 50,000 families that live with the condition every day, like one of my constituents, Hannah Schilling. Hannah is currently a sophomore at Millersville University where she is a strong advocate for 22q – she even wrote and published a book about her experience living with the condition that people around the world have purchased.
In fact, it was Hannah who initially contacted me to ask that I introduce this resolution as part of a national movement to bring awareness to this little-known condition.
Please join me in co-sponsoring this resolution to designate a day raising awareness for the condition and recognizing the role that the Foundation has played in assisting those with 22q.
Introduced as SR273