SOURCE: Cystinosis Research Foundation
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October 21, 2009 19:14 ET
Third Annual 'Fore a Cure' Golf Tournament Raises $165,000 to Fund Cystinosis Research
IRVINE, CA--(Marketwire - October 21, 2009) - The Cystinosis Research Foundation raised
$165,000 from its third annual Fore a Cure, Natalie's Wish golf tournament
that was sold out.
All event proceeds will fund research to find a cure for cystinosis, a rare
metabolic disease that afflicts 500 children and young adults in the United
States and 2,000 worldwide.
"We are so thankful to all those companies and individuals who contributed
to the success of the tournament. Their support is particularly meaningful
in these challenging economic times," said Nancy Stack, president and
co-founder of the Cystinosis Research Foundation. For information on the
CRF, visit www.cystinosisresearch.org.
Ross Plastering of Anaheim was this year's presenting sponsor. SARES REGIS
Group was a silver sponsor. Bank of the West and Carol and Budge Collins
were bronze sponsors. Other sponsors included: Orange County Business
Journal; Noelle Marketing Group; First Regional Bank; Contractors Flooring
Service; Fletcher Jones Motorcars; Traditional Jewelers; Chapman,
Glucksman, Dean, Roeb and Barger; Lincoln Property Group; Wahoo's Fish
Taco; AAA Property Services; Bluewater Grill; Delta Wye Electric; Real Page
Inc.; Sanders & Wohrman; SERVPRO of Tustin; The Wine Club; Dzida, Carey &
Steinman; Champion Fire Systems; Curci Turner and Gannon Design
The tournament field of 144 golfers enjoyed perfect weather for the Oct. 5
event at the Coto de Caza (Calif.) Golf & Racquet Club. The funds were
raised from sponsorships, donations and valuable goods and services offered
at the event's silent and live auctions.
Cystinosis is a metabolic disease that eventually and slowly destroys every
organ in the body, including the liver, kidneys, eyes, muscles, thyroid and
brain. There is a medicine that prolongs the children's lives, but there is
no cure. Almost all sufferers succumb before 40 years old.
"The CRF has issued more than $9 million in grants for cystinosis research
to date, making the foundation the leading funding source for bench and
clinical investigations worldwide. Every day, CRF-funded researchers get
closer to unlocking the mysteries of this terrible disease. We believe we
will find a cure in five to 10 years," Stack said.
In patients with cystinosis the amino acid cystine accumulates in the
tissue due to the inability of the body to transport cystine out of the
cell. This causes development of crystals, resulting in early cell death.
About The Foundation
The CRF was formed in 2003 and has raised nearly $12 million, all of which
is committed for medical research. Currently, the CRF has 31 ongoing
studies with researchers in the United States and throughout Europe.
The CRF recently awarded $1.6 million in new grants to eight teams of
researchers in the United States and France. The autumn call for proposals
is under way with $1.2 million available in research grants.
The CRF has directed significant funds to stem cell and gene therapy
research while supporting researchers whose work is translatable into new
treatments.
By sponsoring the International Cystinosis Research Symposium last year,
CRF facilitates the formation of collaborative relationships among its
research teams. The second symposium is scheduled for April 8-9, 2010 at
the Arnold and Mabel Beckman Center of the National Academies of
Engineering and Science adjacent to the campus of the University of
California, Irvine.
Geoffrey Stack, an owner of the diversified Irvine-based real estate
development, construction and management company SARES REGIS Group, and his
wife, Nancy, formed the Cystinosis Research Foundation in 2003. Their
daughter Natalie, 18, suffers from cystinosis.
Changing The Course Of Research
With the support of CRF's friends and community, the foundation has
significantly changed the course of cystinosis research. CRF's efforts
have produced significant advancements in the treatment of cystinosis. The
research funded at the University of California, San Diego (UCSD) has
resulted in the development of a slow-release form of cysteamine. Late last
year, Raptor Pharmaceuticals Corp., acquired the worldwide license for the
slow-release form of cysteamine from UCSD. They are committed to improving
and advancing the slow-release drug and applying to the FDA for approval of
the new drug in 2010. The slow-release medication will be a reality for all
of our children in the near future. Clinical trials are scheduled to begin
early next year.
The Cystinosis Research Foundation is the largest non-profit provider of
funds for cystinosis research in the world. For more information on the CRF
and the golf tournament, call Zoe Solsby at (949) 223-7610 or visit
www.cystinosisresearch.org.