Senate Concurrent Resolution No. 133

Introduced by Senator Beall

April 18, 2016

Senate Concurrent Resolution No. 133—Relative to Gastroschisis Awareness Day.

LEGISLATIVE COUNSEL’S DIGEST

SCR 133, as introduced, Beall. Gastroschisis Awareness Day.

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

Fiscal committee: no.

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.