Chappaqua teen starts local ALS helpers chapter

by Swapna Venugopal Ramaswamy
Northern Westchester Express

CHAPPAQUA - Nine years ago, when Julia Zinberg's 37-year-old aunt was diagnosed with amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig's disease, she was too young to know what that meant.

Zinberg, 16, who will be a senior at Horace Greeley High School in the fall, is now not only educated about the nerve-wasting disease, but also is determined to make a difference in the lives of those suffering from it.

Last fall, Zinberg along with friend Scott Topel, founded a school club chapter of Extra Hands for ALS, a national non-profit volunteer service assisting people with ALS. It is the only one in Westchester County.

Extra Hands encourages high school and college students to volunteer helping families by doing their chores, running errands or just providing company for the homebound.

Scott Topel and Paige Wolff, both 16, have been visiting Margaret Leary of Yonkers once a week since January.

Leary, 71, a former third-grade teacher at St. Eugene's School in Yonkers, was found to have ALS last year.

Her movements are now highly restricted, and she manages to get out of her apartment only about three times a month. Early this year, as her condition worsened, her 40-year-old son, John, moved in with her. Her daughter, Liz, 37, lives in Pelham and visits her every night, bringing meals.

When Leary heard about the newly established chapter through her ALS support group at the Burke Rehabilitation Hospital in White Plains, she immediately signed up for the service.

So, starting in January, every Thursday after school, Topel's mother, Sherry Topel, drove the students to Leary's apartment where they would spend nearly two hours, vacuuming, cleaning the windows, organizing her bookshelves and once, even cooking.

"I am so impressed with these kids; they have such grace and willingness," said Leary in a barely audible voice. "They always do everything with a smile and say 'my pleasure' every time I ask them to do something."

For Wolff and Topel, the experience has constituted many "firsts."

"I have vacuumed the carpet before, but I have never tried to remove a stain from it, and I had never cleaned windows before," said Topel.

ALS eventually affects all muscles under voluntary control, and patients lose their strength and the ability to move arms, legs, and body.

According to the Extra Hands Web site, as many as 30,000 Americans have ALS and, an estimated 5,000 new cases are diagnosed each year in the U.S.

For Zinberg, volunteering is a way of honoring her aunt, Adele Zinberg, who is now confined to a wheelchair.

Adele Zinberg, who was a practicing gynecologist, switched fields and got a degree in psychiatry before the onset of the disease. She continues to work as a therapist three times a week in women's shelters in New York City, her mother - and full-time caregiver - by her side, writing prescriptions on her daughter's behalf.

"My aunt is so inspiring. She continues to travel the world and has a great attitude." said Zinberg.

Zinberg and her friend, Alexandra Chan, 16, have been helping a family in Elmsford since November.

"It is very rewarding. Knowing how much it means to them, touched me." said Zinberg. "It is good not to be so wrapped up in my own life and help someone else."