125225-125250

HEALTH AND SAFETY CODE
SECTION 125225-125250




125225.  The Legislature hereby finds and declares that:
   (a) Huntington's disease is a chronic progressive inherited
disorder of the central nervous system.
   (b) The constellation of mental and physical symptoms, the
insidious onset of the disorder, and the torment of those at-risk,
waiting throughout their lives to learn if they have been spared,
conspire to make "Huntington's disease one of the most diabolical
diseases known to man." Each child of a patient with Huntington's
disease has a 50/50 chance of getting the disease.
   (c) Males, females, and all ethnic groups may be affected and
there is no effective treatment or cure. Because so little is known
about the disease, many people are misdiagnosed and mistreated.
   (d) The suicide rate among Huntington's disease patients is
estimated to be seven times the national rate.
   (e) The advancement of scientific knowledge about Huntington's
disease, that, because of its extraordinary range of symptoms, serves
as an excellent prototype for other major chronic genetic,
neurologic, and psychiatric illnesses and diseases of aging, such as
epilepsy, muscular dystrophy, and Parkinson's disease, will reveal
fundamental scientific information that may lead to treatment,
prevention, and ultimately a cure for an array of inherited disorders
that affect millions.



125230.  The director may establish any rules or criteria for grants
under this article as the director deems necessary.



125235.  There is hereby created a Scientific Advisory Review
Committee. The membership of the committee shall be composed of 11
members who shall be representatives from each of the following:
   (a) Two from the University of California.
   (b) One from Stanford University.
   (c) One from the California Institute of Technology.
   (d) One from the Hereditary Disease Foundation.
   (e) One from the City of Hope.
   (f) One from the Health and Welfare Agency appointed by the
Secretary of the Health and Welfare Agency.
   (g) One appointed by the Speaker of the Assembly.
   (h) One appointed by the President pro Tempore of the California
Senate.
   (i) One from the National Huntington's Disease Association.
   (j) One from the Committee to Combat Huntington's Disease.
   Except as otherwise provided in this section, members of the
committee shall be appointed by the director, who shall make the
appointments based upon recommendations from the entity or
organization represented.
   The members of the committee shall serve at the pleasure of the
appointing power. The members of the committee shall serve without
compensation, but shall be reimbursed for necessary and travel
expenses incurred in the performance of the duties on the committee.
   The Scientific Advisory Review Committee is hereby abolished one
year after the grants under this article have been made by the
director.



125240.  Pursuant to the rules or criteria as the director may deem
necessary, the Scientific Advisory Review Committee shall review and
recommend approval of grant applications and monitor programs
receiving grants under this article.


125245.  The director may make grants as follows:
   (a) Individual research grants to scientists and facilities
residing in this state that have research experience with basic and
clinical investigations on Huntington's disease and related
disorders. Individual research grants shall not exceed twenty
thousand dollars ($20,000).
   (b) Interdisciplinary workshop grants to scientists and facilities
for the purposes of facilitating interchange among an
interdisciplinary group of investigators regarding problems in the
treatment and care of patients as well as basic research, all of
which may be applicable to a variety of genetic or neuro-degenerative
disorders in addition to Huntington's disease. Individual workshop
grants shall not exceed twelve thousand five hundred dollars
($12,500).


125250.  Not more than 10 percent of any money appropriated for
purposes of this article shall be utilized for the administration of
this article.