Maher Campaigns to Cure Juvenile Myositis

Ridgefielder Kadie Maher was diagnosed with Juvenile Myositis when she was six.

Lucky to have had a family doctor who recognized the rare disease, where an overactive immune system attacks healthy skin and muscles, Maher, 18, is now eager to give back and is helping to raise money for a cure.

Maher's sister, a Pepsi employee, informed the recent Ridgefield High graduate about the Pepsi Refresh Project, a program which awards monthly grants this year to the top 32 causes in six categories.

Realizing her chance to make an impact, Maher was ready to enlist under the $5,000 health category. But she switched to the $250,000 range once she learned that the chairman of Cure JM, a national organization with which Maher participates, was already enrolled. 

Cure JM has held marathons, golf tournaments and the like, but now "everyone is getting together through the commonality of the internet and really pushing for it," Maher said. "It's such a great way to increase awareness. As the website says, our primary goal is to prevent another child from undergoing the suffering and uncertainty JDM poses," she said, using the abbreviation for Juvenile Dermatomyositis, a common form of JM.

With medications that relieve the symptoms of JDM, Maher's challenges as she attends college this fall will focus on balancing her diet, sleep and exercise.

"When I was younger, the challenges were more physical, like climbing up the stairs or pulling a sweatshirt over my head," said Maher, RHS 2010 class president.

However, some physical pains still occur. Along with arthritis, "I am allergic to the sun," Maher said, adding how it is "especially difficult in the summer when everyone is out and about enjoying the heat." She also still has a rash on her hands, the remains of a common childhood JM symptom where sufferers have a butterfly rash sweeping from the bridges of their noses outward across their cheeks.

If Cure JM wins a Pepsi grant, $169,000 of the $250,000 will go towards the JM Center of Excellence Support, $11,000 will go towards the pilot study in cardiovascular risk factors for patients with JM and $70,000 will go toward a genome study. Around 1,000 children are annually diagnosed with JM annually. People can vote three times a day.

Maher's family, particularly her mother, father, three sisters and a brother-in-law, have been great campaigners, she said.

"Everyone brings their own spin to it," Maher said, recalling how one sister printed voting instructions and taped them on all her coworkers' cubicles.

"It's all about consistency and voting once a day. It's about reminding people about voting," she said, noting that when they went to Martha's Vineyard for a 10-day vacation, the entire family took turns voting on her sister's laptop.

"There's lots of other genuinely good causes," Maher said. "But you have to rally behind your own."

To vote, go to the Cure JM website at www.curejm.com and vote all three different ways: via texting, Facebook and a Pepsi account. Cure JM is currently in sixth place and was holding a steady 12th place for the last half of July.