Sure, some celebs may align themselves with charities to enhance their public image: a donation here, a photo op there. But many others take such causes far more seriously. “The only thing celebrity is good for is to bring attention to things that need attention,” says Julianne Moore, who used her stardom to shine a light on Tuberous Sclerosis Complex, a little-known yet relatively common genetic disorder. Stars are often persuaded to go the extra mile through a chance encounter that over time grows into a heartfelt and deeply personal connection. As the following stories show, these relationships can be both painful and poignant.
A chance meeting spurs her to action
Tom Lindsey spent three years unsuccessfully lobbying celebs to help raise awareness of Tuberous Sclerosis Complex. Then he spotted Julianne Moore on a New York City street last April. “I thought, ‘This is the opportunity of a lifetime. I can’t let her get away,’ ” he says. With his then 3-year-old son Tommy—who had been diagnosed with TSC at five weeks old—in tow, he raced up the block to talk to the actress about the genetic disorder, which causes benign tumors to form in many organs, often triggering brain dysfunction and autism. “All this information was pouring out of him,” says Moore, who was drawn to Tommy, then recuperating from recent three-part brain surgery to alleviate his seizures. “I looked down at this kid, and he’s got stitches all over his head. It was heartbreaking.”
Moore agreed to walk to Lindsey’s truck to get some more information about TSC, which afflicts more than 1 million people worldwide. There, Tommy, now 4, helped seal the deal: “The next thing I know,” says Lindsey, 34, a phone company worker, “Tommy climbed out of the stroller, Julianne is holding him, Tommy is kissing her, she’s cracking up and he’s cracking up.” A week later Moore called and agreed to attend the following month’s Rock for a Cure 2003 TSC fund-raiser on Staten Island, N.Y., donating makeup, handbags and clothing as door prizes. “I was so overwhelmed,” she says.
So were the Lindseys. Moore not only helped to raise $80,000 at the event but also brought media coverage to the Tuberous Sclerosis Alliance, a non-profit organization dedicated to finding a cure for TSC, for the first time in its 28-year existence. After Tommy’s diagnosis in 1999 (he has been relatively seizure-free since his April brain surgery), Lindsey and wife Peggy, 34, “promised each other we would raise awareness about this disease,” says Lindsey, “and it’s now actually happening, all because I ran into Julianne Moore.”
Raising spirits and dollars in pursuit of a cure
In 1997 Julia Roberts dropped in on her sister Lisa, who was staying at the Brooklyn, N.Y., home of friends, watching their child while they were away for the weekend. Five-year-old Abigail Brodsky, who suffered from Rett Syndrome, could not talk or walk, “but she and Julia made eye contact and immediately developed this incredible rapport,” says the girl’s mother, Judge Ronni Mann, 52. Adds her father, attorney David Brodsky, 45: “Abigail loved spending time with her because Julia treated her like a regular kid.”
Over the next four years, as a friendship evolved between the child and the actress, Roberts, 35, began a campaign to raise public awareness about the rare neurological disorder, which may afflict as many as 200,000 children, most of them girls, often leaving its victims unable to speak or control their body movements. She narrated and appeared with Abigail in a 50-minute documentary, Silent Angels: The Rett Syndrome Story, which premiered in 2000. Roberts took an active role in fund-raising efforts as well, approaching guests at a 1999 New York City benefit for the International Rett Syndrome Association by saying, “Hi, my name is Julia. Would you like to buy a raffle ticket?” At that same event she auctioned off the strapless pink gown and tuxedo that she and then-boyfriend Benjamin Bratt had worn to the premiere of Stepmom. When Robin Quivers, sidekick to Howard Stern, offered $12,500 for the gown provided Roberts appeared on Stern’s often raunchy show, Roberts not only agreed, she matched Quivers’s bid.
After Abigail died suddenly in June ’01, Roberts attended the funeral and helped comfort the family, cooking lasagna and polenta and playing with Abigail’s siblings, twins Jacob and Emma, now 5. Then Roberts took her RS campaign to Capitol Hill. “Abigail’s spirit motivates me and those with us today to raise our voices about the urgent need for research,” she testified in May 2002. Later that day Roberts visited with 30 RS sufferers. “Some of the girls drool and give sloppy wet kisses,” says Diane Ross, 48, who was there with her daughter Lindsey, 16. “Nothing fazed her,” she says of Roberts, who later made one of Lindsey’s wishes come true by getting her tickets to The Rosie O’Donnell Show. After the taping, Roberts had another surprise: one-on-one time with Rosie. “Julia doesn’t see RS,” says Ross. “She sees a girl.”
A steadfast friend in sickness and in health
Ben Stiller had shared a lot of laughs with best pal Jenifer Estess during a two-decade friendship that first began when both were struggling actors in New York City. “She is one of the funniest and liveliest people I know,” says Stiller, 37. But when Estess, 39, told him in 1998 that she had been diagnosed with amyotrophic lateral sclerosis—the debilitating disease that ravaged Lou Gehrig and today afflicts more than 50,000 people—Stiller’s response was as grave as it was immediate. “It wasn’t, ‘Oh, can I bring you soup?’ ” says Estess, who now breathes with the help of a respirator. “It was, ‘Let’s get down to action.’ He always understood the need to spread the word and raise money.”
To that end, when Estess founded Project A.L.S., Stiller volunteered to be its spokesman and a fund-raiser. “We need to find a cure,” says Stiller, who won national exposure and $282,000 for Project A.L.S. in May 2001, when he teamed up with actress Edie Falco on Who Wants to Be a Millionaire. “Ben took to this cause in a brave and bold way,” says Estess. “He symbolizes the heart of the organization.” His fund-raising tools, she notes, are the same ones that inform their friendship: “love and intelligence.”
Cracking jokes and making a difference
High in a private skybox at the MCI Center in Washington, D.C., in July 2001, Ben Affleck kicked back with his young buddy Joe Kindregan while technicians tested the sound system for the event that had drawn the two together: a benefit for ataxia-telangiectasia, the fatal genetic disease that confines Joe, now 15, to a wheelchair. Suddenly the voice of Affleck’s pal Matt Damon filled the arena with a message for Joe: “I’m sorry I couldn’t be here tonight. Ben told me you like me more.” As Affleck, 31, cracked up, Kindregan beamed beneath his tan baseball cap, a gift from Damon that Affleck had altered by crossing out Matt’s autograph and scribbling, “A REAL star, Ben Affleck.”
To Kindregan, Affleck has been nothing less. The two first clicked five years ago after Affleck spotted Joe in a crowd on the Forces of Nature set. “Ben’s my oldest best friend,” says Joe. “We’re both big kids.” But beyond treating Joe to movie premieres and joke-filled e-mails, Affleck has also helped raise awareness of the battle against A-T, which causes neurological deterioration in approximately 600 U.S. children. “You put Ben’s name on an invitation or an article and it just opens doors,” said Joe’s father, Tom, 45. Watching the disease progress—Joe now must rely on his mom to type his e-mails and translate his increasingly slurred speech, and earlier this year he was also diagnosed with Mixed Connective Tissue Disease, an autoimmune disease similar to juvenile arthritis—Affleck says he feels frustrated he can’t do more: “It seems particularly unfair when something happens to a kid who hasn’t had a chance to experience life.” Which inspires him to find special ways to keep in touch. In July he flew Joe and his family to the Vancouver set of Affleck’s upcoming thriller Paycheck, where they hung out with him and fiancée Jennifer Lopez. “We felt like one of the family,” says Joe’s mom, Suzi, 45. “Ben is Joe’s escape from all the pain.”
In pursuit of new treatments for autism
Anthony Edwards can sound like a medical policy wonk when he gets going on the subject of autism. Just ask the members of Congress the former ER star has buttonholed on his many trips to Washington, D.C., to seek funding for the disease that afflicts nearly 1 million Americans. “He’s no longer considered a celebrity witness but rather an expert witness,” says Hollywood producer Jonathan Shestack, who with his wife, scriptwriter Portia Iversen, founded the Cure Autism Now Foundation.
The connection was forged in the mid-’80s, when Shestack met Edwards, now 41, while visiting the set of Revenge of the Nerds II. The two stayed in touch, and after Shestack and Iversen’s son Dov was diagnosed with autism in 1994, they told Edwards of their despair. “Tony has [two] children, and he could feel our pain and frustration,” says Shestack. “Autism needed a champion. He took it on.”
Since then Edwards has befriended hundreds of parents of autistic children through Cure Autism Now and remains close to Dov, now 11, often spending afternoons playing with the boy at the Shestacks’ home. They “like each other,” says Iversen. That may not seem like a lot—but to the parents of an autistic child, it can seem a small miracle.
JAMIE LEE CURTIS
Wiggy about a hospital and a special girl
Arriving for a black-tie benefit for the Children’s Hospital of Pittsburgh in 1999, Jamie Lee Curtis was asked to cohost a press conference with Katie Westbrook, a patient at the facility. As accustomed as Curtis is to sharing a stage, nothing quite prepared her for the feisty 13-year-old who, having lost her left leg to bone cancer, greeted the star in a wheelchair—and a Day-Glo pink nylon wig. Minutes later, as they faced reporters, Katie announced, “I want everybody in Pittsburgh to go to this fund-raiser so kids don’t have to do what I’ve had to.” Then she yanked off the wig to reveal her bald head covered with the words JAMIE LEE CURTIS ROCKS! “I was laughing and crying,” says Curtis. “Obviously she had me forever after that.”
Sadly, Katie lived only 18 more months. But in that time she and Curtis forged a tight bond. That first night, when scheduled chemotherapy blocked Katie from attending the benefit, Curtis wore the pink hair herself, then phoned Katie throughout the evening to describe its salutary effect on donations. Frequent visits followed, and when Katie could no longer talk, Curtis still phoned. “We’d put the phone up to Katie’s ear, and she’d smile,” says her mom, Beth. A devoted fund-raiser for Children’s, Curtis now wears the wig every time she visits the hospital. “It’s Katie’s message,” she says. “The message is, ‘I’m not going to hide from you, I’m gonna get in your face and make it impossible for you to turn away.’ ”
Jill Smolowe and Jason Lynch
K.C. Baker, Susan Mandel, Lisa Marsh, Nadine Mendoza, Jane Sims Podesta and Pamela Warrick