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.

The dinner at the Bay Club included 13 families from around the U.S. with children suffering from the disease. One of the families who came to the event from Sacramento was Kevin and Theresa Partington who have two children with cystinosis. Their twins, Jenna and Patrick, were diagnosed in 2005 at the age of 15 months. The Partingtons have aggressively set out to raise money for research and announced at the Natalie’s Wish dinner that they had accumulated $406,000 in donations from their own foundation called the Jenna and Patrick Foundation of Hope, and that they were turning the funds over to the Cystinosis Research Foundation.

In addition to the Partington funds, the impressive overall tally of funds donated included individual and corporate donations amounting to $1,505,700 and an additional $213,500 raised from live auction bidding.

In the crowd were Michael K. and Lynette Hayde, Kris and Linda Elftmann, John and Mary Hagestad, Brad and Lisa Hillgren, Mark and Susan Hillgren, Tom and Karen Linden, all of Newport Beach; Rene Carter, Bill and Chris Thormahlen of Coto de Caza; John Coelho and Steve and Elizabeth Rabosky of Newport Coast; Ed and Michelle Carpenter of Huntington Beach; Bill and Marsha Gaboury of Aliso Viejo; John and Jill Manly, and Gary and Carolyn McKitterick of Corona del Mar; Anna and Christina Perez of Brea; Bernie Schneider and Janet Keller of Laguna Beach; Mike Wolfe of Fullerton.

For more information about Natalie’s Wish and the Cystinosis Research Foundation, call Zoe Solsby at (949) 223-7610 or visit www.natalieswish.org.