Meet the Kania Family: Giving Tuesday Co-Chairs

Leah and PJ are parents to four-year-old daughter Olivia, who has been bravely fighting JM for almost two years. Together, they lead Cure JM’s annual Giving Tuesday Fundraiser. At the beginning of treatment, Leah and PJ felt helpless in easing Olivia’s pain—so they channeled their efforts into Cure JM.

“Raising money for Cure JM helped us focus our energy towards something that would support her health, her doctors, and the JM community,” says Leah. 

Since then, the entire family has come aboard to support Olivia. Along with her parents, both sets of grandparents are committed to furthering research. Their support and love from day one have been crucial for Olivia, Leah, and her husband. 

Not only have they given back to Cure JM, but Cure JM has supported their family, too. Leah and PJ have been connected to families who understand precisely what they are going through. Even with the trials of flares and treatments, they have a steady support system to remind them they are not alone. 

The Cure JM community is itself a family, and this family has found a greater home within it. Remission is their shared goal, and fundraising is their strategy to help Olivia get there. All four grandparents—Joe, Lori, Michael, and Celene—have directly participated. Even further, they’ve turned to their social circles for support. They raised awareness with their friends, family, and workplaces. In just one year, Olivia’s family raised over $22,000 for Cure JM’s research. 

To Olivia’s grandparents, supporting their granddaughter’s health is an honor. They admire not just her sense of positivity but also her courage and resiliency. She has maintained her sense of humor and ability to see the good even in the struggle. There was a time when Olivia could not stand. But now, she can run, skip, and ride her bike. The hopeful family surrounding her will continue to watch her improve and grow. Olivia is not alone. There are so many people committed to giving her the best life possible. The Kania’s are just the beginning.

“We hope every family will join us this Giving Tuesday,”  says Leah.  “Every family’s participation is so Important to our success.”

Join the team today and be part of Giving Tuesday—the biggest day of the year at Cure JM! 

Parrish’s Story

We would like to introduce a one-of-a-kind, competitive, and determined young man, named Parrish. His story of resiliency and hope is one that will resonate with many of us in the Cure JM family. Parrish faced many challenges in his journey with JM, but found hope and support in his family and the Cure JM community. We are pleased to now share his experience to help others facing the same struggles during Myositis Awareness Month.

Balancing Work and Caregiving: Strategies for Working Parents of Children with Juvenile Myositis

Balancing the demands of a career with the responsibilities of caregiving is a challenging task for any parent. For those with a child diagnosed with juvenile myositis (JM), a rare autoimmune disease affecting children, the challenge is heightened. Juggling work commitments while providing the necessary care and support for a child with JM can be taxing. In this article, we hope to provide you with a few effective strategies and insights to help working parents navigate this delicate balance.

Join Cure JM

Membership is free and we’ll connect you with a network of support, encouragement, and resources.

Cure JM supports families, patients, and the juvenile myositis research community.

Interested in DIY fundraising but need help?

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