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.

Sydney’s Story

Spring break should be about fun and relaxation. Sandi and her husband Zack expected their trip to Mexico would be the same. Of course, taking

Affordable and Accessible Treatments for JM

Affordable and Accessible Treatments for JM

Two special guest speakers, Michelle Vogel, MPA, IV Solutions RX, and Laurel Cherwin, BSN, RN, IgCN, Octapharma, shared information on navigating affordable treatments and care for JM patients.

The FDA’s Ruling on Vamorolone in DMD

You may have heard about yesterday’s FDA ruling, which approved vamorolone as an alternative steroid for use in Duchenne muscular dystrophy.

Vamorolone is a new steroid alternative with fewer side effects than prednisone. The drug aims to preserve the beneficial anti-inflammatory and muscle-strengthening characteristics of corticosteroids, while decreasing some of the unwelcome side effects, including bone fragility, delayed growth, and behavior changes.

As we learned in yesterday’s announcement, vamorolone was found to be both safe and effective as a therapy for Duchenne muscular dystrophy in its newly approved indication.

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

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