Take a walk for Lupus
V.S. woman, family will celebrate 11th annual Lupus Alliance fund-raiser Oct. 17
By:Nicole Falco September 30, 2004
She had hopes of pursuing a career in dance as a student at the High School for the Performing Arts in Manhattan. But she kept getting hurt, and some days she couldn’t even get out of bed. Friends would say, “But you don’t look sick.”
Doctors couldn’t figure out what was wrong. They’d tell her mother, “Maybe your daughter just doesn’t want to go to school,” but that was impossible. At the High School for the Performing Arts, she was realizing a dream.
After years of misdiagnoses, Christine Miserandino, a Valley Stream resident, was finally diagnosed with lupus, a chronic inflammatory disease that affects the body’s immune system as well as the skin, joints, blood and kidneys. More than 16,000 cases of lupus are diagnosed nationally each year, and as many as 1.5 million Americans may have it. Symptoms include achy and swollen joints, skin rashes, prolonged or extreme fatigue, arthritis, sun sensitivity, anemia and hair loss. The disease can be mild in some patients, and can cause life-threatening problems for others. There is no cure, and no single test can diagnose lupus definitively.
On Sunday, Oct. 17, Miserandino and thousands of others will take part in the Lupus Alliance of America Long Island/Queens Affiliate’s 11th annual Walk Along for Lupus. The 3.1-mile walk takes place in East Meadow’s Eisenhower Park. Registration begins at 8:30 a.m. in the park’s parking fields 6 and 6A. Walkers can pre-register online at www.lupusli.org. The minimum donation for participants is $15. Donations can also be made online for the first time in the walk’s history.
Radio personality Greg T from Z-100 FM will serve as master of ceremonies, Outback Steak House of Merrick is providing free lunches to walkers beginning at 11:30 a.m., the Roadhouse Band will entertain, and there will be face painting and clowns for children. Also, walkers and fund-raisers are eligible for many prizes, depending on how much money they raise.
“It is our biggest fund-raiser,” said Jo Anne Quinn, executive director of the Lupus Alliance affiliate in Bellmore. “It changed the whole face of the organization. We give a lot [of prizes] because we are very grateful. We are a little fish in a very big pond. There are a lot of walks on Long Island.”
The Lupus Alliance of America, which was founded in 1955, is a volunteer-driven organization devoted to helping and supporting people with lupus and their families. Ninety-three percent of all donations raised by the Bellmore group directly benefit Lupus patients and their families by supporting research and programs, Quinn said. The other 7 percent cover the cost of operations.
“We give as much money as we can to research, but we find that our most important job is providing support for people with lupus and their families,” Quinn said.
Miserandino and more than 30 of her relatives and friends will be walking this year. Over the years, her team has become one of the alliance’s top fund-raisers. When she first participated in the walk, with only a handful of relatives and friends, they raised $100 and thought that was a lot. Each year the number of walkers on her team has grown, and so has the amount of money they’ve raised. Last year Miserandino’s team raised more than $5,500. This year it has already raised $5,400, on its way to its goal of $6,000.
The event has grown, too. According to Quinn, 300 people walked the first year – in the rain – and raised $30,000 for the organization. Last year, more than 12,000 took part, raising more than $220,000. Besides private donations, the Lupus Alliance relies on corporate sponsors, including Outback, Cablevision and the North Shore-LIJ Health System. And last year, more than 38 high schools participated in the walk, raising more than $40,000. They included Calhoun, in Merrick, Mepham, in Bellmore, Sewanhaka, in Floral Park and Kennedy, in South Bellmore. “The kids just keep on coming,” said Quinn.
She explained that the walk can be an extremely emotional experience for its participants. “There are some people whose goal is to [just] finish the walk,” Quinn said.
Miserandino said the walk is emotional, but it’s also fun. After the walk, her teammates gather at her parents’ house in Valley Stream to celebrate.
“It’s so easy to be negative about having an illness,” Miserandino said. “I use the walk as a yearly celebration that I was able to walk and that I have such supportive friends and family.”
Her parents, Donald and Janet, take part, alone with her brother, Dominick, and his wife, Margherita. Her Phi Sigma Sigma sorority sisters from Hofstra walk, too, even though it has been years since Miserandino graduated. The list goes on, including her godmother, Emma Haran, an aunt and uncle from Pennsylvania, and many others.
One of her friends, Frank Donato, along with his band Poorbox, is donating all the money the band makes at a gig in Lindenhurst. Her sorority sisters are selling purple and orange ribbons in the student center at Hofstra. Dominick Miserandino, who lives in Malverne, is raising money for Lupus on his Web site, www.thecelebritycafe.com. He’s raised nearly $2,000. Anyone who makes a donation to the Lupus Alliance on the Web site is eligible for free advertising there. The Web site is viewed by millions each month. “Seeing what she goes through was a lot of the motivation for doing all I can,” Dominick said.
Even those who won’t be walking want to help. Miserandino’s 80-year-old grandmother, Vera Pope, of Brooklyn, raised $100 by selling costume jewelry to members of her senior center. Pope gathered her own jewelry and more donated by friends, put each piece in a box and sold them for $2. “She was so proud that she made $100,” Janet Miserandino said.
“It’s very hard having a child with an illness,” she went on. “You feel very helpless … you’d rather you were sick. When we got involved seven years ago, we felt it was something we could do to be proactive, to show Christine our support besides taking her to doctors’ offices for doctors visits.
“[And the Lupus Alliance] has always been there for us as a family,” Janet said. “So we really put every effort into this walk.”
Her daughter is surprised each year by how many new people join the effort. This year she has received donations from people she knows only through her Web site, www.butyoudontlooksick.com. “I feel like so many people really go above and beyond to support me and to support the Lupus Alliance,” she said.