by Jacqueline Sternberg
It was during Career Day last year at Bannockburn Elementary School in Bethesda when a student's question for a visiting parent, there to talk to students about his work, made teacher Liza Levenson sit up and take notice.
The third-grader, Levenson recalls, asked the neurologist, "How can you look at someone's brain and tell if they have MS?"
"I wanted to ask her, 'Why did you ask that?' " says Levenson of Bethesda.
She later did ask the girl that question, "and she said it was because her dad had MS.
"I said, 'Me, too,' " Levenson recalls. That exchange, she continues, led her to begin meeting with the girl, who was not a student of hers, regularly during lunch to talk about this and that - including their mutual experience as children of parents with MS.
"It was an instant bond," Levenson says, noting the girl had never before met anyone who also had a parent with MS, multiple sclerosis, a baffling disease of the central nervous system that is usually diagnosed in adults ages 20s-40s and is more prevalent in women. "It was a powerful experience for her to talk to someone who could understand and relate."
As for herself, their talks became "a starting-off point" for a new direction, a new idea for ramping up her practice of tikkun olam (repairing the world), says Levenson, 29, who says she's been inspired by the words of one of her favorite authors, Toni Morrison: "If there's a book that you want to read, but it hasn't been written yet, then you must write it."
For Levenson - who as a child growing up in Chevy Chase didn't realize her father's many physical problems over the years were symptoms of MS - the "book" she saw that needed to be written was an organization that focused on bringing together young and adult children of parents with MS, along with their family members, to learn from each other in a supportive environment.
After her father, David Levenson, a securities lawyer, was diagnosed with the disease at age 60 in 2003, Levenson - a six-year teacher with Montgomery County Public Schools who has also taught classes for religious school students at Temple Shalom in Silver Spring and Mishkan Torah in Greenbelt - became active with the local chapter of the National Multiple Sclerosis Society.
But as a long-time volunteer, who served her campus Hillel at the University of Maryland as an intern in engagement and outreach and volunteered in numerous ways for Disability Services on campus, Levenson says she "saw a void" in support for children of parents with MS. Through the Multiple Sclerosis Society, there were occasional planned activities for children, she says, but she felt that was not enough.
"After Dad was diagnosed, Mom and Dad went to a support group for spouses, but there was no place for children," says Levenson, who remembers accepting her dad's health problems as a child, but feeling "sad" a lot, and clueless about what was really wrong with him when numerous doctors he'd seen over the years repeatedly failed "to put together the dots."
"So I just decided we [children of parents with MS] needed a place," says Levenson, who last November founded her nonprofit, dreamMakerS - named after one of her favorite songs, "Moon River" - whose mission, she explains, "is to connect, support and empower children of parents with MS."
Founded as a nonprofit 501(c)(3) organization, the volunteer-run dreamMakerS, says Levenson, its executive director, is geared to offer family programs - all free of charge - that engage both kids and their parents with MS and other chronic conditions. Its website (msdreammakers.org) boasts photos from its first event, a family fitness day that took place last month at Lifetime Fitness in Rockville. There, a personal trainer taught adults gentle stretching techniques (a symptom of MS is painful muscle spasms), and kids how they could help their parents, says Levenson, who points out that afterward, participants had a chance to talk together and share experiences, which will continue to be an important component of dreamMakerS' programming.
Levenson also aims to start a "big brother, big sister" mentoring program, where adult children of MS can mentor young children - and a pen-pal program to connect kids across the globe.
A kick-off gala for dreamMakerS in March at the Katzen Arts Center at American University helped get its programming off the ground, and Levenson is excited to have just gotten a major financial boost to continue its work from Washington Nationals player Ryan Zimmerman, whose ziMS Foundation to fight MS (Zimmerman's mother has the disease) presented Levenson with a $25,000 check at its second annual "A Night at the Park" gala event.
Held June 30 at Nationals Park, Levenson shared the spotlight at the event with the National Capital Chapter of the National Multiple Sclerosis Society (which was presented with a check for $35,000), and her excitement with her parents, David and Louisa (now residents of Potomac), who attended the event.
Having her dad there was especially gratifying for Levenson, who recalls that when she started dreamMakerS, he was initially "leery" of being publicly associated with it.
"Dad never complained about his MS," she says, but also, "he didn't necessarily see the way [his MS] impacted all of us, as a family."
Things have changed, though. "He's done a 180," says Levenson, noting her dad participated in a Q&A at the March fundraiser. "He's totally proud of me."