Famed NFL Quarterback Jim Kelly To Headline ‘Natalie’s Wish’ Fundraiser

March 14, 2007

Pro football hall of fame quarterback Jim Kelly, whose 8-year-old son, Hunter, died of a rare, incurable disease in 2005, will be the featured speaker at this year’s Natalie's Wish, the annual fund-raising event for the Cystinosis Research Foundation. The event is scheduled for Friday, June 1, at the Balboa Bay Club in Newport Beach. Tax deductible sponsorships and tickets at $275 are available.

This is the sixth annual Natalie’s Wish event. All proceeds support medical research studies dedicated to finding treatments and a cure for cystinosis, a rare metabolic and slowly fatal disease that mostly strikes children.

Approximately 2,000 people worldwide are affected with the disease. Due to the small number of sufferers little public attention has been given to cystinosis. Cystinosis is among the 6,000 rare or “orphan” diseases in the United States that affect 25 million Americans. An orphan disease claimed the life of Kelly’s young son.

Kelly, who was inducted into the National Football League’s Hall of Fame in 2002, led the NFL’s Buffalo Bills to four Super Bowl appearances and is regarded as one of the all-time greatest quarterbacks to play the game. He’s a legend in the western New York city where he holds virtually every team passing record.

But a few months after his retirement in 1997 Kelly and his wife, Jill, learned that Hunter, then 4 months old, suffered from a rare and fatal illness called Globoid-Cell Leukodystrophy for which there is no effective treatment or cure. Also known as Krabbe Disease, the ailment is a degenerative disorder of the central and peripheral nervous systems. Krabbe Disease occurs in one of approximately 100,000 births. The doctors gave Hunter two years to live.

As soon as the diagnosis was made, the Kellys established Hunter’s Hope, which has raised $14 million to fund research for new treatments, therapies and a cure for Leukodystrophy and other neurological disease-related research. Hunter died Aug. 5, 2005.

Fundraiser Named For Natalie Stack

Natalie Stack, 15, of Corona del Mar is a cystinosis sufferer, one of only about 500 in the United States.

Her father, Jeff, a managing partner of the SARES●REGIS Group of Irvine, is prominent in the Southern California real estate industry and is a past chairman of the National Multi Housing Council.

Jeff and his wife, Nancy, established the Cystinosis Research Foundation of Irvine in 2003 after learning on Natalie’s 12th birthday that she had a secret wish: “To have my disease go away forever.” Natalie’s plea motivated the Stacks to launch a campaign to aggressively fund research aimed at treating and curing the disease.

Since that time Natalie’s parents and their friends, including many from the real estate community, have raised more than $4 million that is funding new research which already is producing promising treatments. Donations from the Stack’s friends and family have made the Cystinosis Research Foundation the largest non-profit funder of cystinosis research in the world.

“We are thrilled to have Jim Kelly at this year’s event,” said Nancy Stack. “Jim and Jill Kelly have made a commitment to increase awareness and find treatments and a cure for Krabbe Disease. Hunter’s Hope and Natalie’s Wish have much in common.”

Disease Attacks The Body’s Organs

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. Over a period of years, the cystine damages various organs including the kidneys, liver, muscles, white blood cells, eyes and central nervous system. Other complications occur that include muscle wasting and difficulty swallowing. As the cystine accumulates in the cells, the various organs slowly deteriorate. Last year’s Natalie’s Wish event raised more than $1.3 million, enough to fund 12 major studies in the United States, France, the Netherlands and Italy.

There are three clinical forms of cystinosis. Infantile (nephropathic) cystinosis; late-onset cystinosis; and benign cystinosis. Infantile cystinosis is the most severe and the most common type of cystinosis. Children with nephropathic cystinosis appear normal at birth but by 9 to 10 months of age they develop symptoms that include excessive thirst and urination and failure to thrive. Children often appear pale and thin and have short stature. The abnormally high loss of phosphorous in the urine leads to rickets.

After one year of age, cystine crystals appear in the cornea and causes severe sensitivity to light (photophobia). Children with cystinosis also have an increased level of cystine in their white blood cells. In time, patients can develop problems such as hypothyroidism, severe muscle weakness and central nervous system complications. These children have normal intelligence, but have an unusual defect in short-term visual memory.

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