Published in the NY Valley Stream Herald, May 1-7, 2008 Author: Andrew Hackmack

Frank, Christine and Olivia Emma Donato at the Lupus Gala Brunch

For half of her life, Christine Donato has been living with Lupus. Not only has she accepted the limitations it poses, but she has worked to make a better life for all those living with the disease. This past Sunday, she was honored along with family members for all the time they have given to the Lupus Alliance of America. The Long Island-Queens affiliate each year recognizes those who have given to the organization in a significant way.
Donato, a former Valley Stream resident who now lives in Massapequa, was first diagnosed with the disease when she was 15. Lupus is a chronic, autoimmune disease that causes inflammation of various parts
of the body including skin, joints, blood and kidneys. Right now, there is no cure for the disease but it is treatable.
It took her a long time to be diagnosed with Lupus because the symptoms mimic those of other diseases, Donato said. In the 15 years she has knowingly lived with the disease, she has had her good days and her bad days. “It’s very much a rollercoaster ride,” she said, “because you really don’t know what the future holds.” She explained that most people diagnosed with Lupus are women in the prime of their life. Many find out they have the disease just as they are starting a career or a family. For Donato, she had to leave her job as a marketing executive.
While her life hasn’t followed the path she expected, Donato is happy. Giving up a career gave Donato time to help others who suffer from the same affliction. Her service to the Lupus Alliance is endless. “I easily spend a few hours a week volunteering for them,” she said. “It doesn’t feel like work because it’s a passion for me. This is
something I really believe in.” She trained for nearly eight weeks to become a phone counselor, speaking with other women who suffer from Lupus. Jo Ann Quinn, executive director of the Long Island-Queens affiliate of the Lupus
Alliance, said Donato is a comforting voice for others. “She’s really very good at it,” Quinn said. “She relates well to everyone she speaks to.”
Every year Donato and her family members participate in a walk to raise money for the alliance. It was 15 years ago she and her mother walked for the first time, raising $200, “which we thought was a lot,” Donato said. This year she led a team of 34 family members and friends, raising nearly $10,000. Afterwards, her mother Janet Miserandino hosted a small party at her Valley Stream home to thank those who participated and celebrate another year her daughter was able to walk.
Donato also publishes an online newsletter for Lupus patients, ButYouDon’tLookSick.com. She started writing nearly four years ago with an essay titled “The Spoon Theory” that was published in 40 medical newsletters.
Today, her site has 4,000 readers from all over the world and is updated daily. Donato said she has some volunteer contributors but writes about 80 percent of the material herself. “I can give a voice to so many who don’t have a voice,” she said.

Christine Donato with fellow honoree Greg T from Z100 Radio
Last July, Donato had her first “miracle” when her daughter was born. She was told sbhe wasn’t able to have kids, so the news came as quite a surprise. She was also hospitalized four times during the pregnancy. But now she has a happy and healthy baby girl. The birth of her daughter has given her renewed enthusiasm for her
work with the Lupus Alliance. There have been no medical advances in the treatment of Lupus in 40 years, Donato said, so she hopes with enough funding and research there will be progress in the future. “I don’t want my daughter to have to take care of me,” she said.
Quinn said money raised by the Lupus Alliance goes to support research, education and individual families. She said the organization holds four education days each year, hosts numerous support groups and counseling sessions, and alerts patients to new developments in Lupus research. They also give out yearly grants to
those who need financial help such as paying rent, a car repair or medical bills. The organization holds numerous kid programs each year for children who are either suffering from Lupus or have a family member with the
disease. Quinn said simply the goal of the Lupus Alliance is to make life better for people with the disease until there is a cure. She said Donato’s award is well-deserved. “Christine has been a delight to work with all these years,” Quinn said. “She’s very dedicated.”Not only is she committed to the cause, Quinn explained, but Donato
goes about her efforts with a smile on her face. “Lupus should be this happy,” Quinn said.
Miserandino, who volunteers along with her husband and son, said Sunday’s award ceremony was very special for all of them. “It was a wonderful day,” she said. Donato said the award is nice recognition for her efforts but it’s
not why she and her family members contribute so much time and energy to the Lupus Alliance. “It’s become a really big part of our lives trying to help others,” she said. “You volunteer and you do things because you want to.”