Bill Text: CA SCR133 | 2015-2016 | Regular Session | Chaptered

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Bill Title: Gastroschisis Awareness Day.

Sponsorship: Partisan Bill (Democrat 1)

Status: (Passed) 2016-07-07 - Chaptered by Secretary of State. Res. Chapter 79, Statutes of 2016. [SCR133 Detail]

Download: California-2015-SCR133-Chaptered.html

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BILL NUMBER: SCR 133	CHAPTERED
	BILL TEXT

	RESOLUTION CHAPTER  79
	FILED WITH SECRETARY OF STATE  JULY 7, 2016
	ADOPTED IN SENATE  MAY 2, 2016
	ADOPTED IN ASSEMBLY  JUNE 30, 2016

INTRODUCED BY   Senator Beall

                        APRIL 18, 2016

   Relative to Gastroschisis Awareness Day.


	LEGISLATIVE COUNSEL'S DIGEST


   SCR 133, Beall. Gastroschisis Awareness Day.
   This measure would recognize July 30, 2016, as Gastroschisis
Awareness Day in California.



   WHEREAS, There are one in 2,229 individuals born with
gastroschisis in the United States and roughly the same number born
in California annually; and
   WHEREAS, While this disease may affect small numbers of people,
gastroschisis affects many Americans; and
   WHEREAS, Many Americans living with gastroschisis have serious and
debilitating conditions that have a significant impact on the lives
of those affected, including, but not limited to, failure to thrive
or slow growth, short bowel syndrome, multiple organ transplants, and
long-term feeding issues; and
   WHEREAS, Individuals and families affected by gastroschisis often
experience problems such as a sense of isolation, difficulty in
obtaining an accurate and timely diagnosis, few treatment options,
and problems related to accessing or being reimbursed for treatment;
and
   WHEREAS, The cause of gastroschisis is relatively unknown, and
patients and their families must bear a large share of the burden for
things such as raising funds for research; and
   WHEREAS, Hundreds of residents in California are among those
affected by gastroschisis; and
   WHEREAS, Avery's Angels Gastroschisis Foundation (AAGF) is
organizing a nationwide observance of Gastroschisis Awareness Day on
July 30, 2016, and every year thereafter; and
   WHEREAS, AAGF is based in Raleigh, North Carolina, and is the only
nonprofit organization for gastroschisis support nationwide; and
   WHEREAS, The founder of AAGF's son, Avery John Rauen, passed away
from complications of his gastroschisis on July 30, 2009, at the
University of North Carolina Hospital, and this date is to
commemorate him and all others who are living with or who are
deceased from gastroschisis; and
   WHEREAS, A statewide proclamation can greatly benefit the families
coping with this disease; now, therefore, be it
   Resolved by the Senate of the State of California, the Assembly
thereof concurring, That the Legislature recognizes July 30, 2016, as
Gastroschisis Awareness Day in California; and be it further
   Resolved, That the Secretary of the Senate transmit copies of this
resolution to the author for appropriate distribution.