SOURCE: Cystinosis Research Foundation

Cystinosis Research Foundation

November 17, 2011 17:33 ET

'Fore A Cure' Golf Tournament Raises $215,000 at Santa Ana Country Club to Fund Cystinosis Research

IRVINE, CA--(Marketwire - Nov 17, 2011) - A sold-out field of golfers, sponsors and other donors helped the Cystinosis Research Foundation raise more than $215,000 at its Fore A Cure, Natalie's Wish Golf Tournament Nov. 14 at the Santa Ana Country Club. All proceeds fund research for a cure for cystinosis, a rare metabolic disease that afflicts 500 children and young adults in the United States and 2,000 worldwide.

"We had 148 golfers, 47 sponsors, an elegant private golf course and clubhouse facilities and perfect weather. Who could ask for more?" said Vince Ciavarella.

"Many of this year's sponsors and golfers supported our prior three tournaments to our deep gratitude. It also was rewarding to make new friends among those playing in their first Natalie's Wish tournament. It's thrilling to have a widening circle of supporters open their hearts for our cause and with us to share the achievement when cystinosis is cured," Ciavarella said.

Nancy Stack, president and co-founder of the Cystinosis Research Foundation, said before the tournament that 2012 will be a landmark year for major CRF-sponsored advancements toward a new medication and a cure. The federal Food and Drug Administration is expected to approve a 12-hour medication, developed through CRF funding. Also, the UCLA Institutional Review Board is considering approval of a 2012 clinical trial for a potential stem cell-based cure, she said.

"Today we are closer to the cure than ever," she said. Since 2003, CRF has awarded $12.9 million in research grants worldwide. This year the Natalie's Wish annual event in Newport Beach raised $1.6 million. Four golf tournaments have raised more than $845,000. All event and administration costs are privately underwritten, enabling all contributions to be dedicated to research.

Silver sponsors this year, paying $10,000 each, were Ben's Asphalt and SARES•REGIS Group. Bronze $5,000 sponsors were: Bank of the West, CBRE, Commercial Roof Management, Howard Roofing, Lee & Associates, Nelson Paving & Sealing, Oltmans Construction, RBA Builders, TLG Paving and Tucker Electric.

Other major sponsors included: 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. Law firm Manly & Stewart contributed Titlist golf balls.

Fletcher Jones Motorcars and Traditional Jewelers were hole-in-one sponsors. David and R.L. Peters sponsored a putting tournament and Champion Fire Systems was the long-drive sponsor.

There were 12 hole and tee sponsors and five sponsors of wine, gifts and photo services.

Eight live auction items, including trips to the Jack Daniel's Distillery in Lynchberg, Tenn., 38 silent auction items and an opportunity drawing generated $55,260.

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. 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. Almost all sufferers succumb before 40 years old and average life expectancy is 28 years.

The CRF is the leading funding source for cystinosis bench and clinical investigations worldwide.

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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