FOR A GOOD CAUSE:

On the eve of her 12th birthday, Natalie Stack of Corona del Mar was not wishing for a pony or a trip to Disneyland. Her birthday wish was much more valuable: “to have my disease go away forever.”

Her disease is cystinosis, a hereditary metabolic disorder that slowly destroys the body’s organs — particularly affecting the kidneys and eyes — and since that day, Jeff and Nancy Stack have been working in the hopes of making their now 16-year-old daughter’s wish, and the wishes of hundreds of other families, a reality.

On June 1, their organization, the Cystinosis Research Foundation, will hold its annual Natalie’s Wish fundraising event, hoping to add to the $4.1 million they have raised for cystinosis research since 2002.

“A normal day for a child with cystinosis is constant medication and eye drops and, of course, you have all the side effects, such as losing your appetite because of all the drugs,” Nancy Stack said. “No one knows where a cure will come from, but we know that by funding research, we’re certainly going to get there sooner.”

Former Buffalo Bills quarterback and Pro Football Hall of Fame inductee Jim Kelly, who will be the featured speaker at this year’s fundraiser, is all too familiar with the perils of rare diseases.

Two years ago, Kelly lost his 8-year-old son, Hunter, to Krabbe disease.

Like the Stacks, he founded a research foundation, Hunter’s Hope, demonstrating his commitment to “turning negatives into positives.”

“The bottom line is no matter what you do in life, in sports, in business, in family, you are going to face tough times, and you can’t just feel sorry for yourself,” Kelly said. “My wife and I knew we could make good from Hunter’s experience by changing the lives of other children.”

Kelly also hopes to ensure that all states are testing for the maximum amount of diseases possible when a baby is born, as early detection means early treatment.

“My son never smiled, he never moved a bone in his body, so to see other children with the same disease who can communicate and have some motor skills is so encouraging,” he said.

Krabbe disease and cystinosis are two of the approximately 6,000 rare or orphan diseases that, all together, affect 25 million Americans, Stack said, adding that research on rare disorders is crucial as it can lead to discoveries about other, more common ones.

The Cystinosis Research Foundation funds 16 ongoing studies in four countries and recently launched the first Cystinosis Research Fellowship Program, making it the largest provider of cystinosis-research funding in the world.

For now, most cystinosis patients have to take between eight and 10 medications each day to help extend their lives into the second and third decades, but the Stacks remain optimistic.

“We have such a remarkable group of people supporting us by helping to give a gift that is really priceless, which is hope for future children,” Nancy Stack said. “When you have hope like our daughter does, you can live your life and enjoy your life and make the best of your situation.”

IF YOU GO

WHAT: Fourth and Goal: the sixth annual Natalie’s Wish fundraiser

WHEN: 5:30 p.m., June 1

WHERE: The Balboa Bay Club, 1221 W. Coast Highway, Newport Beach

COST: $275 per person

INFO: The evening will include cocktails, dinner, several presentations and a silent auction. For more information, go to www.natalieswish.org or call (949) 223-7610. Learn more about Hunter’s Hope at www.huntershope.or g.