Teen With MS Raises Funds and Awareness

Kaley Zeitouni has dealt with the Internal Revenue Service and knows the ins and outs of bulk mailing. She has helped organize a silent auction and helped make money from a spaghetti dinner.

When she isn’t doing her high school homework, Kaley runs a nonprofit group, Youth Against Multiple Sclerosis, which promotes awareness of the debilitating disease and, in four years, has raised $100,000 to fight it.

With its teenage board of directors, Kaley’s organization has helped more than just MS patients. The 17-year-old has inspired schoolmates to perform more charitable acts.

“She’s given an opportunity for students to rally around the flagpole. Leadership is a very difficult quality to judge and cultivate. She’s offered a degree of leadership that most institutions don’t see,” said Roger Fuller, upper school principal of Milken Community High School in Los Angeles. “She’s really changed the fabric of our school.”

Multiple sclerosis is something Kaley knows a lot about. In the fall of her seventh-grade year, she awoke one morning with a tingling in her toes and fingers. Her eyes were jumpy at first, and she later developed double vision. Three months later -- at age 12 -- she learned she had multiple sclerosis.

Usually diagnosed between the ages of 20 and 50, only 5% of the 400,000 Americans with MS are children, according to the National Multiple Sclerosis Society.

Once a wallflower who buried herself in schoolwork, Kaley changed her perspective on life after her diagnosis.

“I still love school, but I was able to really change my priorities and focus more on my friends and relationships. I was able to find the best of both worlds,” she said. “I’m so thankful for every day.”

The year after her diagnosis, Kaley joined 50 friends, fellow students and family members in the annual MS Walk. Even though she participated for the fun of it, she said she was surprised when her walk team raised more than $5,000.

By the next walk in 2001, her middle school friends had spread out to various high schools and gained new friends. Their walk team swelled to 277 people who raised $17,000.

Today 250 to 300 walkers on the Youth Against Multiple Sclerosis team are expected to participate in the three-mile 2004 MS Walk at the Los Angeles Memorial Coliseum in Exposition Park. They aim to raise $100,000 over a year, through walk pledges and other fundraisers.

Three years ago, Kaley formed a committee of about 30 teens at Milken to teach her peers about MS through a newsletter and demonstrations. Committee members put tape on sunglasses to show what it’s like to have impaired vision and put popcorn in kids’ shoes to give them the sensation of tingling feet.

“These are the people who are going to be running society,” Kaley said. “They need to know about this disease, to know how to fight it, to know that we need to find a cure for it.

“A lot of kids say they are going to college to become a scientist because they want to find a cure for breast cancer, for example. We want those kids to be thinking in the back of their minds that they want to find a cure for MS.”

She said other schoolmates would eventually lead large companies. “When they decide where they’re going to donate their money, they can remember that they learned about MS.”

In December 2002, Youth Against Multiple Sclerosis was granted nonprofit status with its under-age board of directors. To meet legal requirements, three parents fill the positions of president, treasurer and secretary. They work out of donated office space in North Hollywood and have a website at

www.youth againstms.org.

“Too often adults are dismissive of the abilities of teens to make a difference.... This demonstrates the positive power that teens can have,” said Arney Rosenblat, spokeswoman for the National Multiple Sclerosis Society.

Youth Against Multiple Sclerosis ranks 14th out of 264 walk teams nationally that have raised more than $10,000, Rosenblat said.

The organization will remain essentially in the hands of teens, said Kaley, the only board member with MS. Younger students -- some of them siblings of current board members -- are being trained to take over the board in late May. (While no incoming board member has MS, a few have family members who do.)

“We’re still going to help and be mentors,” Kaley said. “We feel that as soon as people become adults, they lose a lot of their passion. A lot of bureaucracy gets involved. If it stays with kids, we feel they’ll keep the organization alive.”

Kaley has touched the lives of many people.

Actress and former Disney Mouseketeer Annette Funicello, who also has MS, helped design a “Kaley” bear that raised money to help fight the disease.

By organizing a benefit spaghetti dinner, events director Ellisa Gysi said Kaley “got me to care about something and to realize what kind of power I have.”

Because of Kaley, her neurologist Andrea Goldberg formed a walk team for Kaiser Permanente employees in Panorama City.

“What a pleasure, an honor, it is being inspired by her,” Goldberg said.

Kaley feels that, while MS doesn’t define her completely, it has made her who she is today.

“I wouldn’t live each day this way if I didn’t have MS, and I wouldn’t have accomplished everything I have. I would not have been so determined to start this organization, to reach out, to change lives, to find a cure,” she said.

“From every bad there comes a good. I truly feel there was a reason I was diagnosed with MS, that it wasn’t my neighbor, that it was me.”