Olivia’s Story

Olivia's Story of Hope, photo of family

Olivia is four years old, and she’s been fighting juvenile myositis for almost two years. At the beginning of her treatment, Olivia’s parents, Leah and P.J., felt helpless in easing her pain. They wanted to help her however they could, so they channeled their efforts.

“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 her grandparents are committed to furthering research. The 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 fed into their family too. Leah and P.J. have been connected to families who understand exactly 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 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 Kanias are just the beginning.

Leah and P.J. Kania are the Cure JM parents leading the annual Giving Tuesday Fundraiser.

Ask The Doc: Why Exercise and Nutrition Are Important In JM with Brian Feldman MD

Ask The Doc: Why Exercise and Nutrition Are Important In JM

We are honored to share this insightful presentation and Q&A on the importance of exercise and nutrition in treating juvenile myositis with Dr. Brian Feldman of The Hospital for Sick Children and the Cure JM Clinical Care Network.

What role does exercise and nutrition play in JM treatment? When should JM patients be cleared for exercise? What effects do exercise and nutrition have on disease outcomes?

Vamorolone FAQ

Vamorolone FAQs in JM

With the looming FDA approval of the drug vamorolone in Duchenne muscular dystrophy, there are questions surrounding the drug’s status for trials in juvenile myositis. We have consulted with JM experts on the potential implications of a pending approval for the drug in another disease and what this currently means for JM patients living in the U.S.

Shop to Support Cure JM

We have compiled a list of Cure JM items you can purchase, as well as other products, that might help you and your child in their JM journey.

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.