Sportstorial

The second annual ‘Fore A Cure’ Golf Tournament, a benefit for the Cystinosis Research Foundation of Irvine, Calif., raised $225,000. The Nov. 10, 2008 event at the Coto de Caza Golf & Racquet Club drew 144 golfers and raised the money through individual and corporate sponsorships, donations and auctions.

All event proceeds will fund research for better treatments and a cure for cystinosis, a rare genetic and metabolic disorder that afflicts 500 children and young adults in the United States and about 2,000 worldwide. Since 2003 CRF has funded 45 research studies and fellowships totaling more than $6.9 million. Nine new studies were funded so far this year in the United States, France, Italy and Belgium.

“We are grateful to our sponsors and participants for their generous support of the CRF and Natalie’s Wish. This money will fund vital cystinosis research for new treatments and a cure,” said Vince Ciavarella, who chaired the event.

“This event also enables us to educate more people about this terrible disease as well as CRF-sponsored advancements toward new treatments and a cure,” he said.

Cystinosis 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 afflicted with cystinosis succumb before 40 years old, Ciavarella 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.