Natalie Stack was 2 months old when doctors spotted a mass on her liver.
Doctors removed the tumor, but the bad news wasn’t over. She had Cystinosis, a rare genetic disease, so rare only 2,000 people, mostly children, have been diagnosed worldwide.
Cystinosis attacks the body’s organs and eventually destroys them.
The news devastated her parents, Geoffrey and Nancy Stack of Corona del Mar.
“Then our life took that turn,” Nancy Stack recalled.
The parents put Natalie on medication right away, earlier than with most Cystinosis patients.
“The medication prolongs their life,” Nancy said.
Treatment is not a cure, which is why the Stacks founded the Irvine-based Cystinosis Research Foundation, in which all of the funds go to researchers who are advancing treatments and working on a cure.
“We knew we could make a difference,” said Geoffrey Stack, managing director at Irvine-based Sares-Regis Group, a real estate developer and property management company.
The Stacks carry on in their pursuit of a cure for Cystinosis, which has honed in on stem cells. Nancy puts in 50 to 70 hours a week, working directly with researchers and doctors.
The Stacks have raised $20 million in the 10 years since the Stacks started their foundation. Their first fundraiser, held in 2003, raised $102,000.
“We were in shock,” Geoffrey said. “We are very lucky. We had a lot of people here in the business community respond very favorably.”
The money has funded the development of a delayed-release medication, which means, once approved, children can be treated every 12 hours instead of every six hours, Nancy said. Kids will be able to sleep through the night.
Natalie is now 21 and considered healthy, thanks to early treatment. She still has her kidneys, which is rare for people with Cystinosis. She’s in her senior year at Georgetown University.
Other Causes
Scores of parents have been inspired by their children to become active in causes. These parents are dogged in their efforts and put in an enormous amount of time and money.
The number of people they help is impossible to measure. What’s certain is their work has a ripple effect and helps far more people than just their own children.
Among examples of such devotion locally:
• Erin Runnion’s 5-year-old daughter Samantha was abducted, sexually assaulted and murdered 10 years ago. Afterwards, Runnion set out to improve children’s safety and founded Westminster-based The Joyful Child Foundation, which helps prevent crimes against children.
• Fariborz Maseeh, founder of Newport Beach-based investment management company Picoco LLC, has a son with autism and saw a need for a new kind of treatment center, one that brings a wide range of services under one roof. He founded Irvine-based Kids Institute for Development & Advancement.
• Barry Saywitz, who also has a son with autism, has helped raise hundreds of thousands of dollars for autism-related charities. Saywitz is president of Newport Beach-based The Saywitz Co.
• Doug Hansen, who works as a medical biller, helped raised money to build a playground in Costa Mesa designed for children with disabilities that opened in 2008. His inspiration was daughter Angel, 11, who was born with severe disabilities and uses a wheelchair.
“They didn’t think she’d live very long,” said Hansen, who with wife Jennifer started Newport Beach-based Angel’s Charity to build the playground, modeled after one they saw in Los Angeles.
The project cost $1.7 million, funded by countless car washes and bake sales, and donations from corporate sponsors and others.
It also meant a lot of running around: Hansen pushed his daughter in 14 marathons around the U.S.
When he did, he was often interviewed by local media, which was usually followed up by donations.
The Hansens, who have three children, visit the playground regularly.
“It’s still a little emotional there, when I go,” he said. “I really can’t believe we did that.”
Autism Activities
Once a month Poita and Bill Cernius host a Friday Night Club for children with disabilities at their home in Newport Beach.
They do karaoke, play games and socialize.
Their 16-year-old daughter Natalie came up with the idea, when her brother Andrew, an 18-year-old with autism, became distraught when their older brother was going away to college.
“She just wanted to get her brother some friends,” Poita said.
It worked, and Andrew has made good friends. The idea caught on and United Cerebral Palsy of Orange County and Talk About Curing Autism became involved.
They began sending kids with all kinds of disabilities to the Cernius home.
“It turned into this magical thing,” Poita said. “It was like humanity came through our front door. Everyone found someone to be with and something to do.”
Her husband, whom the kids call “Coach Bill,” mans the basketball hoop in the backyard.
Bill, a partner in Latham & Watkins LLP’s Costa Mesa office, feeds the kids the balls so they can shoot baskets.
United Cerebral Palsy offered a conference room for movie night and games, and now the Friday Night Club is held twice a month, once at UCP and once at the Cernius home.
Easter Seals
Barbara Glassman, an information-technology contractor, has been supporting Easter Seals Southern California for about nine years.
For the past three years, Glassman, a Yorba Linda resident, has served on the Walk With Me committee. The fundraiser, to be held in November this year, is one of Easter Seal’s largest.
Barbara and Michael Glassman’s daughter, Lora, was 4 months old when her head stopped growing. The doctor suggested she wait a few months to see if her condition would improve.
Glassman thought otherwise. She went to a neurologist.
Lora was diagnosed at six months with a brain abnormality. It was then doctors started to tell Glassman what her daughter might never be able to do.
“‘Never, never, never’ is all I heard,” she said. “I looked at this 6-month-old child and said, ‘How do they know?’”
Glassman was able to get Lora into treatment early.
Easter Seals became a big part of their life when Barbara returned to school to get a master’s degree. She took Lora to an after-school Easter Seals program.
Lora is now 23. She uses a wheelchair, but her cognitive skills are fine.
She graduated from Fullerton College and is now in her senior year at California State University, Fullerton. She wants to be a voiceover actor.
Easter Seals is still part of Lora’s life. She does speaking engagements. She goes to Easter Seals camp every year in Big Bear. As she does have minor seizures, Easter Seals provides a “life coach” who helps her navigate school.
She’s met many friends through Easter Seals.
“We’re big supporter of Easter Seals,” Barbara said.
“One in Heaven”
Erik Rees tells people he has three children, “two here and one in heaven.”
Rees and his wife, Stacey, carry out the wish of their daughter, Jessie Joy Rees. She died in January at age 12 with inoperable brain tumors.
“My job is to steward her wish,” her father said.
During a 10-month fight with cancer, her wish was to help other kids with cancer. And she did.
She filled brown paper lunch bags with toys, to be delivered to kids in the hospital. She stuck stickers on the bags and wrote sunny messages on the outside.
Lunch bags turned into appealing “JoyJars,” jars of stuffed animals, stickers and goodies, to make a kid smile. Volunteers stuff the jars at the JoyFactory, a donated space in Rancho Santa Margarita.
“It became a very positive distraction,” Rees said. “As any parent would, you just make it happen.”
Rees is a pastor on the senior leadership team at Rick Warren’s Saddleback Church in Lake Forest. He’s also a life coach.
The Jessie Rees Foundation has raised $250,000. More than 23,000 kids in 162 hospitals, 175 Ronald McDonald Houses and 4,000 homes have received JoyJars. This year’s goal is to get 50,000 jars to sick kids.
The foundation’s second annual golf tournament at Coto de Caza Golf & Racquet Club aims to raise $100,000 for 20,000 JoyJars to be delivered during the holidays.
“We help with the resilience factor,” Rees said.
“If a child receives encouragement, support and knows people are there for them, their resilience increases immensely,” he said. “I wish we could say we save lives, but we do help kids stay strong in their fight.”
