‘Ninja Nana’ spearheads Cure JM fundraisers
Written by Brigitta Burks | News Editor | BBurks@toledofreepress.comPauline Lenz has earned herself the nickname “Ninja Nana” for her untiring support of Cure JM, a nonprofit supporting research of juvenile myositis.
Juvenile myositis is an autoimmune disease with the primary symptoms being weak muscles and what appear to be skin rashes. Instead of the immune system protecting the body by attacking infections and other agents, the immune system begins attacking the body. JM encompasses different subcategories, the most common being juvenile dermatomyositis (JDM).
Lenz, a Toledo-area resident, is a frequent poster on Cure JM’s Facebook page, supporting other families. She has also helped organize a fundraiser for Cure JM, taking place at about 20 Chuck E. Cheese’s locations across the state Sept. 7. Her grandson Kinser has JM.
“One of the little boys (from Facebook) mentioned I should be Ninja Nana because ninjas never give up,” Lenz said.
Nonprofit educates, funds research
Kinser, a first-grader, was diagnosed in August 2010. Lenz became involved in Cure JM a few months later.
“They taught me how to understand this disease, and there is no better place than this foundation because it’s made up of world-known specialists,” she said.
Cure JM was co-founded in October 2003 by three women whose children or grandchildren have JM. Shari Hume, one of co-founders, has a son who was diagnosed at 4. It took six months to diagnose her son, now 14 and in remission.
“We felt completely powerless,” Hume said, remembering watching her son go through IV and chemotherapy treatments and take 20 pills per day.
However, she found inspiration in her son’s resilience.
“We realized, in the face of adversity, he had all this strength,” Hume said. “We thought we could be catalysts for the cure.”
Now, nine years later, the nonprofit puts on conferences, has raised $4 million, helped fund research centers in Chicago and Washington, D.C., and put out a book, “Myositis and You.”
The group also provides emotional support for families. “People come to us and say, ‘Gosh, I felt so alone and then I realized I had this community I can talk to,’ ” Hume said.
Cure JM has a medical advisory council as well.
“We can email these world-known specialists and they email us back. I mean we’re talking to doctors,” Lenz said.
Identifying JM
One of these doctors is Lisa Rider, the deputy chief of the Environmental Autoimmunity Group for the National Institute of Environmental Health Sciences.
Rider said JM is believed to be the result of multiple genes and environmental factors. The disease can go into remission and be brought back by triggers like sunburn, colds/viruses and vaccines.
“Remission is kind of a classic word I think because you always have the disease. It’s finding out what the trigger is of the disease,” Lenz said.
There is no standard way to treat JM, Rider said. Prednisone, which can have side effects like weight gain and mood swings, is the mainstay of treatment.
Since JM is a rare disease, affecting about 17,000 across the country, drug companies don’t heavily research it.
“It’s not going to be a blockbuster for them,” Rider said, adding, however, “I’m having more contact with drug companies over the past two years than in my whole career.”
Most pediatricians won’t see a case of JM in their lives, Hume noted. Some patients have printed off pictures from Cure JM’s website and brought them to their doctors.
Many doctors aren’t trained to spot JM, leading to an average diagnosis delay of four months.
“Everybody needs to spot it earlier,” Rider said. “The more quickly people can get on to effective treatment, the better.”
With treatment, patients can expect a relatively normal life expectancy, Rider said.
“Research is making a big difference with patients for their outcomes and effective treatments,” Rider said.
Finding a cure
Ninety-five percent of Cure JM’s finances go toward research grants and programs. The foundation, which was the top-rated nonprofit in 2011 and 2012 by Great Nonprofits, relies strictly on volunteers.
“We rely on volunteers like Pauline because we don’t have government grants or big corporate sponsorships,” Hume said.
Lenz originally approached the Chuck E. Cheese on Monroe Street about hosting a small fundraiser. It quickly got bigger.
“They right away said, ‘You know what? We’ll contact the Airport Highway location and we know the manager at the Parma location,’ ” Lenz said.
“It wasn’t more than a couple days later that their corporate office called me,” she said. “It went from, ‘We’re gonna have a nice little fundraiser at these three,’ to ‘We’re going to have a giant statewide fundraiser from Chuck E. Cheese’s.’”
“[Supporting nonprofits is] a way for our stores to not only connect with their local communities, but to give back,” said Cristina R. Hayes, spokesperson for Chuck E. Cheese’s.
Lenz is also working to get Oct. 13 declared “Cure JM Day.” Councilwoman Lindsay Webb is sponsoring a resolution and is encouraging state legislators to do the same. Council is set to vote on the “Cure JM Day” resolution on Sept. 25.
“Sept. 7, I encourage everyone with kids or without kids or with grandkids to go to Chuck E. Cheese’s,” Webb said at the Aug. 28 meeting. “My kids are super-excited.”
Even with her tireless work for Cure JM, Lenz stays passionate about keeping her grandson’s life as “normal” as possible.
“Kinser loves to play Mario games. He loves to go out and play soccer … kickball with us. He has uncles that he loves to play with and wrestle with,” Lenz said. “He is a strong person. He is a caring person. He is a loving little man.”
The Chuck E. Cheese’s locations will donate 15 percent of its sales from 3 to 9 p.m. Sept. 7 to Cure JM. For a full list of locations and more information, visit www.curejm.org. The foundation will also participate in the Chase Community Giving Contest on Sept. 6 to win $250,000. Visit www.facebook.com/ChaseCommunityGiving for more information.
Tags: Brigitta Burks, Chuck E. Cheese's, Cure JM, juvenile myositis, Lindsay Webb, Lisa Rider, Pauline Lenz, Shari Hume
