SOURCE: Cystinosis Research Foundation

Cystinosis Research Foundation

September 08, 2009 20:06 ET

Third Annual 'Fore A Cure' Golf Tournament Set Oct. 5 at Coto de Caza to Fund Cystinosis Research

IRVINE, CA--(Marketwire - September 8, 2009) - The Cystinosis Research Foundation is holding its third annual Fore A Cure, Natalie's Wish golf tournament Monday, Oct. 5, 2009 at the Coto de Caza (Calif.) Golf & Racquet Club. 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.

Ross Plastering of Anaheim is this year's presenting sponsor. Other sponsors to date include: Media Sponsor Orange County Business Journal; Silver Sponsor, SARES REGIS Group; Bronze Sponsor, Carol and Budge Collins; Printing Sponsor, Noelle Marketing Group; Longest Drive Sponsor, First Regional Bank and Putting Sponsor, Contractors Flooring Service.

The tournament is open to 144 golfers for an entry fee of $2,500 per foursome. Sponsorship benefits and underwriting opportunities are still available. Information and registration is available on line at The event raised $240,000 for cystinosis research last year.

"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," said event Chairman Vince Ciavarella.

"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," he 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.

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

Contact Information

  • Contact:

    Zoe Solsby

    Art Barrett