Laura
11-08-2007, 03:22 PM
http://www.cnn.com/2007/LIVING/11/07/moore.heroes/index.html
CNN Heroes: Julianne Moore's bid for a cure
Story Highlights
Actress Julianne Moore serves as a spokeswoman for tuberous sclerosis
She became involved after a chance meeting with the father of a patient
Her involvement has helped raise more than $1 million for research
(CNN) -- Julianne Moore was running errands in Manhattan when she heard Tom Lindsey call out to her.
Julianne Moore and Tommy Lindsey; Moore said the Lindseys are "working very, very hard to bring awareness and find a cure" for TSC.
At first the actress thought he was just another fan, but she soon realized Lindsey wanted much more than an autograph.
He explained that his 3-year-old son Tommy suffered from a disease called tuberous sclerosis complex and that he and his wife were trying to raise awareness about it.
"He said, 'We need somebody's help,'" Moore remembers. "'We're having this gala ... could you come?'"
While Moore had received similar invitations before, there was something about his story that touched her. She attended the event and began a partnership with the Lindseys that has lasted for five years and raised more than $1 million for TSC research. Watch Moore and the Lindseys talk about TSC »
Before their son was born in 1999, Staten Islanders Tom and Peggy Lindsey had never heard of TSC. When they noticed that Tommy would occasionally twitch in his car seat, they had some concerns.
While their family and pediatrician tried to convince them it was normal, they eventually brought the baby -- then 5 weeks old -- to the emergency room. After a battery of tests, the Lindseys were told their son had Tuberous Sclerosis Complex; the seizures were being caused by tumors that had engulfed one side of his brain.
The neurologist who delivered the news wasn't optimistic. Peggy Lindsey remembers being told, "He'll never walk. He'll never talk. You should consider an institution." Tom Lindsey recalls it was "a very dark day."
TSC is a genetic disorder which causes tumors to form in various organs, primarily the brain, eyes, heart, skin, kidneys, liver and lungs.
According to the Tuberous Sclerosis Alliance, a support group for families, at least two children a day are born with TSC and approximately 1 million people worldwide suffer from the disease.
Some people are severely impacted, suffering seizures, severe mental retardation and physical handicaps, while others are more mildly affected. The fact that symptoms vary so widely contributes to the disease being frequently misdiagnosed.
"It's just as common as cystic fibrosis, " says Tom Lindsey. "Yet no one in the medical community is familiar with it."
Horrified by the doctor's diagnosis, the Lindseys sought a second opinion. Tommy was treated with anti-seizure medication but still suffered about 50 seizures a day, which slowed his development; by the time he was 3, he only had the maturity level of a 17-month-old.
Eventually the Lindseys decided to have him undergo brain surgery to remove the tumors. Three surgeries later, the seizures stopped and in time Tommy learned to speak.
While Tommy's health problems nearly consumed the Lindseys' lives, they also knew they had to do something to help others.
"We made a pact that we weren't going to allow this to happen to anyone else, if there was anything that we could do about it," Tom says. "We decided we wanted to make tubular sclerosis a household name."
By using the media to raise awareness, they hoped to make TSC as mainstream as multiple sclerosis, Lou Gehrig's disease or breast cancer -- resulting in more research funding and, one day, a cure.
The Lindseys threw themselves into their work. While they would eventually raise close to $200,000 for research, they knew the best way to get media attention was to find a famous face to sign on to their cause; they approached numerous celebrities but to no avail.
Then one evening in 2002, Tom Lindsey walked past Julianne Moore on the street -- and their fortunes changed.
Since then, Moore has become a committed and outspoken advocate for TSC. She's raised more than $500,000 through fundraising events with Lacoste, Cartier and Fredericks of Hollywood, and in April 2005 she testified on Capitol Hill and helped get a federal research grant.
To honor her commitment and dedication, the TS Alliance founded the Julianne Moore Research Fund.
Today, Tommy is 8 years old. He still has residual brain damage, but he's working with a behaviorist and speech therapist and is now able to ride a specially modified bike.
While Peggy Lindsey spends most of her time caring for Tommy and his 2-year-old sister Abigail, she also manages to devote considerable time to TSC advocacy.
Tom Lindsey, who holds down two jobs to help pay the family's medical bills, also works tirelessly for the cause, traveling to Washington every year to lobby for more research funding.
Together, the Lindseys and Moore have brought global attention to a disease that affects approximately 50,000 people in the United States.
"It's not necessarily that ... I can really fix my son," Tom Lindsey said. "I can hope that my son's life is going to fix everyone else coming in behind him."
CNN Heroes: Julianne Moore's bid for a cure
Story Highlights
Actress Julianne Moore serves as a spokeswoman for tuberous sclerosis
She became involved after a chance meeting with the father of a patient
Her involvement has helped raise more than $1 million for research
(CNN) -- Julianne Moore was running errands in Manhattan when she heard Tom Lindsey call out to her.
Julianne Moore and Tommy Lindsey; Moore said the Lindseys are "working very, very hard to bring awareness and find a cure" for TSC.
At first the actress thought he was just another fan, but she soon realized Lindsey wanted much more than an autograph.
He explained that his 3-year-old son Tommy suffered from a disease called tuberous sclerosis complex and that he and his wife were trying to raise awareness about it.
"He said, 'We need somebody's help,'" Moore remembers. "'We're having this gala ... could you come?'"
While Moore had received similar invitations before, there was something about his story that touched her. She attended the event and began a partnership with the Lindseys that has lasted for five years and raised more than $1 million for TSC research. Watch Moore and the Lindseys talk about TSC »
Before their son was born in 1999, Staten Islanders Tom and Peggy Lindsey had never heard of TSC. When they noticed that Tommy would occasionally twitch in his car seat, they had some concerns.
While their family and pediatrician tried to convince them it was normal, they eventually brought the baby -- then 5 weeks old -- to the emergency room. After a battery of tests, the Lindseys were told their son had Tuberous Sclerosis Complex; the seizures were being caused by tumors that had engulfed one side of his brain.
The neurologist who delivered the news wasn't optimistic. Peggy Lindsey remembers being told, "He'll never walk. He'll never talk. You should consider an institution." Tom Lindsey recalls it was "a very dark day."
TSC is a genetic disorder which causes tumors to form in various organs, primarily the brain, eyes, heart, skin, kidneys, liver and lungs.
According to the Tuberous Sclerosis Alliance, a support group for families, at least two children a day are born with TSC and approximately 1 million people worldwide suffer from the disease.
Some people are severely impacted, suffering seizures, severe mental retardation and physical handicaps, while others are more mildly affected. The fact that symptoms vary so widely contributes to the disease being frequently misdiagnosed.
"It's just as common as cystic fibrosis, " says Tom Lindsey. "Yet no one in the medical community is familiar with it."
Horrified by the doctor's diagnosis, the Lindseys sought a second opinion. Tommy was treated with anti-seizure medication but still suffered about 50 seizures a day, which slowed his development; by the time he was 3, he only had the maturity level of a 17-month-old.
Eventually the Lindseys decided to have him undergo brain surgery to remove the tumors. Three surgeries later, the seizures stopped and in time Tommy learned to speak.
While Tommy's health problems nearly consumed the Lindseys' lives, they also knew they had to do something to help others.
"We made a pact that we weren't going to allow this to happen to anyone else, if there was anything that we could do about it," Tom says. "We decided we wanted to make tubular sclerosis a household name."
By using the media to raise awareness, they hoped to make TSC as mainstream as multiple sclerosis, Lou Gehrig's disease or breast cancer -- resulting in more research funding and, one day, a cure.
The Lindseys threw themselves into their work. While they would eventually raise close to $200,000 for research, they knew the best way to get media attention was to find a famous face to sign on to their cause; they approached numerous celebrities but to no avail.
Then one evening in 2002, Tom Lindsey walked past Julianne Moore on the street -- and their fortunes changed.
Since then, Moore has become a committed and outspoken advocate for TSC. She's raised more than $500,000 through fundraising events with Lacoste, Cartier and Fredericks of Hollywood, and in April 2005 she testified on Capitol Hill and helped get a federal research grant.
To honor her commitment and dedication, the TS Alliance founded the Julianne Moore Research Fund.
Today, Tommy is 8 years old. He still has residual brain damage, but he's working with a behaviorist and speech therapist and is now able to ride a specially modified bike.
While Peggy Lindsey spends most of her time caring for Tommy and his 2-year-old sister Abigail, she also manages to devote considerable time to TSC advocacy.
Tom Lindsey, who holds down two jobs to help pay the family's medical bills, also works tirelessly for the cause, traveling to Washington every year to lobby for more research funding.
Together, the Lindseys and Moore have brought global attention to a disease that affects approximately 50,000 people in the United States.
"It's not necessarily that ... I can really fix my son," Tom Lindsey said. "I can hope that my son's life is going to fix everyone else coming in behind him."