SOURCE: Cystinosis Research Foundation

Cystinosis Research Foundation

September 29, 2011 12:39 ET

Fourth 'Fore A Cure' Golf Tournament Set Nov. 14 at Santa Ana Country Club to Fund Cystinosis Research

IRVINE, CA--(Marketwire - Sep 29, 2011) - The Cystinosis Research Foundation is holding its fourth Fore A Cure, Natalie's Wish golf tournament Monday, Nov. 14, 2011 at the Santa Ana Country Club. All 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.

"Our CRF tournaments have been extremely successful, selling out each year and raising a total of $630,000. This will be our first tournament at Santa Ana Country Club, which is among Southern California's most venerated and exclusive courses. This is going to be a very special event," said Vince Ciavarella, tournament chairman.

Sponsors at the $5,000 bronze level, to date, are: Joe McKay, Lee & Associates Commercial Real Estate Services; Dan King, Commercial Roof Management; Lawrence Malekow, Howard Roofing; Tom Gilchriese, TLG Paving Company, Jon Ely, Bank of the West and Bill Skeffington, Ben's Asphalt, Inc.

Other major sponsors include: Independence Bank, dinner sponsor; Joe Ott, Contractors Flooring California, lunch sponsor; Javier Reyes, Villa Park Landscape, cart sponsor; media sponsors Orange County Business Journal and Multihousing Professional Magazine and sign sponsor Noelle Marketing Group. Traditional Jewelers of Newport Beach is providing a gold Rolex watch for a hole-in-one. David and R.L. Peters are sponsoring the putting tournament and Champion Fire Systems is the long-drive sponsor.

Others include: Dave Hoffman, Mechanical Air Conditioning, sponsoring the cost of a set of Taylor Made golf clubs for the super raffle and a tee along with tee sponsors CDC Designs, Steve Bellitti and Tom Taylor. Bruce Lambert of Gramercy Gifts is contributing to the goodie bags. Ralph Roach of Eagle Construction and Contractors Flooring California are hole sponsors.

Live auction items this year include adventuresome and relaxing getaways, fine wines, dinners, a premier sporting event and an exercise bike. Getaways include airfare and accommodations for four people to the Jack Daniels Distillery in Tennessee and a long weekend stay for 12 people at Vista Las Palmas in Palm Springs. For foodies there's an "exceptional case" of wine as well as dinner for eight at the Golden Truffle in Costa Mesa and a Duffy Boat ride to dinner at the Bluewater Grill. There is a suite for 10 at the Honda Center for a major pro hockey matchup Nov. 20 between the Ducks and Detroit Red Wings. Augie Nieto, inventor of the world famous Lifecycle, has donated an Octane xR3 stationary seated bike for the auction.

In addition to the Taylor Made golf clubs, this year's super raffle includes airfare and two nights at the Del Monte Lodge and golf at Pebble Beach. There are at least 30 valuable and unique items slated for the silent auction.

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

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. 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.

The CRF has issued more than $12.9 million in research grants for cystinosis research, making the foundation the leading funding source for bench and clinical investigations worldwide.

"Advancements made by CRF-funded scientists are astonishing," Ciavarella said. "New cystinosis treatment discoveries are being tested in trials for Huntington's disease, Parkinson's disease and NASH, a progressive liver disease."

Geoffrey Stack, an owner of the diversified Irvine-based real estate company SARES•REGIS Group, and his wife, Nancy, formed the Cystinosis Research Foundation in 2003. Their daughter Natalie, 20, suffers from cystinosis.

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