Sacramento Couple Have Big Impact In Efforts To Fund Research For Cystinosis

June 13, 2007

One year after their twin children were diagnosed with a rare and fatal disease called cystinosis, Kevin and Teresa Partington of Sacramento have emerged as major fundraisers in the battle to develop improved treatments and a cure for the metabolic ailment that causes the slow destruction of the body’s organs and affects mostly children.

The Partingtons have raised more than $400,000 in donations largely from friends in the Sacramento area. They recently presented the money to the Cystinosis Research Foundation, which is funding a raft of major medical and scientific studies in the United States and Europe.

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. The disease chiefly strikes children. Doctors say there are about 500 cystinosis sufferers in North America and an estimated 2,000 worldwide. The incidence of twins afflicted with cystinosis is even rarer.

“We are so impressed by the years of work undertaken by the Cystinosis Research Foundation and encouraged by the scientific progress they’ve funded that we are certain it’s in the best interest of our children and others with cystinosis to support foundation’s efforts wholeheartedly,” said Kevin Partington, a senior vice president with the commercial real estate brokerage Colliers International.

“Cystinosis is a metabolic disease that eventually, slowly destroys every organ in the body, including the liver, kidneys, eyes, muscles, thyroid and brain. There is a medicine that prolongs our children’s lives, but there is no cure,” said Nancy Stack, a founder of the Cystinosis Research Foundation. She acknowledged that almost all sufferers succumb to the illness before 40 years old.

Currently, the primary medication that exists to treat the disease has to be taken every six hours. That means parents have to wake their children up in the middle of the night so the children can take the foul-tasting medicine called cystaemine. Side effects of cysteamine include stomach ulcers, damage to the esophagus, abdominal pain, diarrhea, headache, depression, drowsiness, fever, loss of appetite, nausea and skin rash.

Partington said that after the initial shock and feeling of helplessness upon being told that the health of their toddlers Jenna and Patrick would deteriorate and the disease would shorten their lives dramatically, the Partingtons contacted the Cystinosis Research Foundation, formed in 2003 in Irvine, Calif., by Nancy and Jeff Stack, an owner of the SARES●REGIS Group, a major real estate development and management company. The Partingtons sought to learn more about cystinosis, join the small community of parents of children who suffer from it and find what steps they could take to help. The Stacks’ daughter Natalie, 16, suffers from the disease.

The Stacks flew from Southern California to Sacramento to meet with the Partingtons. They talked about ways to help families and children with the disease. The Partingtons were recently named to the CRF board of directors.

In the few years since the CRF was formed in 2003 CRF has raised impressive sums of money. Partington said he and the Stacks are of like minds that every dollar donated is spent directly on funding new research. And already the research is yielding promising results.

But the Partingtons saw that more money was needed so they went to work. Through the Jenna and Patrick Foundation of Hope they held a number of benefits, including a charity golf tournament, to raise money. On June 1, 2007, barely a year after launching their fundraising efforts, the Partingtons flew to Orange County for the sixth annual Natalie’s Wish fundraising banquet in Newport Beach and with 460 dinner guests looking they on handed over a check to the Stacks and the Cystinosis Research Foundation for $406,000.

“We promise to keep bringing the checks, if you keep working to find a cure,” Teresa Partington announced to the Stacks at the banquet.

The money the Partington’s raised from their friends in Northern California was a significant boost to this year’s CRF fundraiser, which raised $2.125 million – a million more than the previous year. To date, the CRF has raised $6.25 million and currently is funding 12 major medical and scientific studies at universities in the United States, France, the Netherlands and Italy.

Moreover, the Stacks have organized the first International Cystinosis Research Symposium to be held in April 2008 at the Arnold and Mabel Beckman Center of the National Academies of Engineering Science at the University of California at Irvine.

“In 2004 I attended a cystinosis symposium at the National Institutes of Health,” said Nancy Stack. “Only five of the over 30 speakers were actually doing cystinosis research. For the CRF symposium next year we will invite over 25 speakers, all of whom are currently working on finding better treatments and a cure for cystinosis. All of the invited speakers are doctors and scientists funded by the CRF,” she said.

The Partington’s recall the moment that changed their lives was when doctors told them their twin children had the disease.

“The doctors told us to sit down and when they told us told us that Jenna and Patrick had cystinosis, we didn’t have much of a reaction because we didn’t know what it was. But it was numbing to hear the words. We got a lot of education in a short time. It was heartbreaking. We were in shock and we still are,” Partington said.

For more information about Natalie’s Wish and the Cystinosis Research Foundation, call Zoe Solsby at (949) 223-7610 or visit www.natalieswish.org. For information about the Jenna and Patrick Foundation of Hope, call (916) 396-5800 or visit www.jennaandpatrick.org.