SOURCE: Cystinosis Research Foundation

Cystinosis Research Foundation

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.

Contact Information

  • Contact:
    Zoe Solsby
    949-223-7610
    Art Barrett
    714-602-2021