California Legislature—2013–14 Regular Session

Assembly Concurrent Resolution No. 151

Introduced by Assembly Member Wilk

May 19, 2014

Assembly Concurrent Resolution No. 151—Relative to Diffuse Intrinsic Pontine Glioma (DIPG) Awareness Week.

LEGISLATIVE COUNSEL’S DIGEST

ACR 151, as introduced, Wilk. Diffuse Intrinsic Pontine Glioma (DIPG) Awareness Week.

This measure would declare the week of May 25, 2014, to May 31, 2014, inclusive, as Diffuse Intrinsic Pontine Glioma (DIPG) Awareness Week to honor those who work to make research and resources a reality for children suffering from DIPG and their families.

Fiscal committee: no.

WHEREAS, The Legislature recognizes that the quality and
character of life in the communities across the State of California
are reflective of the concerned and dedicated efforts of those
organizations and individuals that are devoted to the welfare of
the community and its citizenry; and

WHEREAS, In this regard, the Legislature commends the efforts
of the Jack’s Angels Foundation and other similar foundations for
their continuing efforts to raise awareness of, and fight against,
malignant brain tumors; and

WHEREAS, James-William “Jack” Demeter, the namesake of
the Jack’s Angels Foundation, lost the fight against Diffuse
Intrinsic Pontine Glioma (DIPG) at the age of three; and

WHEREAS, DIPG is a malignant brain tumor that affects the
brain stem. Only children are afflicted with DIPG and it is usually
diagnosed between five and nine years of age; and

WHEREAS, According to Dr. Sabine Meuller of the University
of California at San Francisco, DIPG is one of the worst diagnoses
a patient and his or her family can face. There are essentially no
long-term survivors and median survival is only about 9 months.
Progress has been hampered by the perceived risk of biopsy of
these tumors. To date, no therapy has been shown to be effective
and children with DIPG are often treated on early phase 1 clinical
trials with a trial-and-error approach; and

WHEREAS, The Jack’s Angels Foundation is a nonprofit
corporation that donates all money raised to establish a new DIPG
research fund at the Los Angeles Children’s Hospital. The
foundation is committed to promoting the most innovative research
and clinical trials to help shed light on the nature of DIPG and the
genetic anomalies that cause it. In order that there be greater hope
for survival, the foundation also actively researches cures for DIPG
through medical trials and scientific research; and

WHEREAS, The mission of the Jack’s Angels Foundation is
also to support the quality of life for patients diagnosed with DIPG
patients and their families; and

WHEREAS, The mission of the Jack’s Angels Foundation also
includes increasing public awareness and understanding of DIPG,
potentially increasing the protocol for pediatric brain tumor
research, and increasing investment by pharmaceutical companies
in research pertaining to DIPG; and

WHEREAS, It is the intent of the Legislature to call attention
to organizations, like the Jack’s Angels Foundation, that serve to
bring people together for the united purpose of actively pursuing
improvements in their communities; now, therefore, be it

Resolved by the Assembly of the State of California, the Senate
thereof concurring, That the Legislature pause in its deliberations
to honor those who raise awareness of, and fight against, malignant
brain tumors, including DIPG; and be it further

Resolved, That the Legislature hereby declares the week of May
25, 2014, to May 31, 2014, inclusive, as Diffuse Intrinsic Pontine
Glioma (DIPG) Awareness Week to honor those who work to
make research and resources a reality for children suffering from
DIPG and their families; and be it further

Resolved, That the Chief Clerk of the Assembly transmit copies
of this resolution to the author for appropriate distribution.