THE CROWD:Dinner raises $2M for cystinosis research

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A remarkable $2.125 million in donations was received by the Cystinosis Research Foundation at the sixth-annual Natalie's Wish dinner at the Balboa Bay Club and Resort in Newport Beach. It was a record amount for the Cystinosis Research Foundation, and in fact a record amount for charitable donations for a dinner of its kind countywide. The evening was fronted by pro football Hall of Fame quarterback Jim Kelly. The football star lost his son to a rare incurable disease and compared his struggle to that of children suffering from cystinosis. It was a very emotional evening.

"I want to help Natalie's Wish come true for many, many kids," Kelly said, adding, "This is all about helping children. Giving these kids a dream. Giving these kids a chance," he continued, explaining his plans to launch a state by state campaign to offer disease screening for newborns to help detect cystinosis. The disease strikes children. Amino acid cystine cells accumulate in the tissue resulting in the inability of the body to transport the cystine out of the cell. This causes development of crystals which kill the healthy cells in the body. It is a rare disease. Presently there are about 500 cystinosis sufferers in North America and an estimated 2,000 worldwide.

The evening at the Balboa Bay Club attracted 460 donors and was organized by Corona del Mar residents Jeff and Nancy Stack, founders of the Cystinosis Research Foundation. The Stacks are also the parents of 16-year-old Natalie Stack, the event's namesake, who was diagnosed with cystinosis as an infant. Natalie's Wish stems from the Stack's very personal plight to save their child and to help others in similar circumstances. Nancy Stack went on to explain the disease further, "Cystinosis is a metabolic disease that eventually and slowly destroys every organ in the body, including the liver, kidneys, eyes, muscles, thyroid and brain." Stack added, "There is medicine that prolongs our children's lives but there is no cure." Stack also shared that almost all cystinosis sufferers succumb to the disease before they reach the age of forty.