In This Issue:

🎈May is Myositis Awareness Month

🎈Happy Mother's Day!

🎈2025 Clinical Trials Enrolling

🎈Walk Strong to Cure JM - Peak Season!

🎈Mental Health Awareness Month

🎈Make the 2025 Family Conference Your Summer Vacation

🎈Upcoming Regional Events, Training, and Online Events



For our complete listing of available resources, click here.

To learn more about our current research projects, click here.

To learn more about the Cure JM Foundation and how to join, click here.

May is Myositis Awareness Month, a time to lift our voices for JM families fighting for brighter futures. Juvenile myositis, a rare autoimmune disease affecting 2–4 in a million kids, teens, and young adults, often means a tough road to diagnosis and care. Families like Addi, Dominique, and Christine Johnson in Alaska inspire us, testifying at their State Capitol to make May Myositis Awareness Month official in their state, amplifying hope for kids facing infusions and harsh treatments.

Your story can inspire change. Share your JM journey to raise awareness, helping others understand this fight. Visit our DIY fundraising page at curejm.org/diyfundraising for creative ideas to support Cure JM’s mission, turning your voice into hope. Throughout May, we’ll share ways to join our Myositis Awareness Month efforts. Connect with our community and help kids thrive.

This Mother’s Day, we honor the extraordinary Cure JM moms who pour their hearts into their children’s fight against juvenile myositis. Your strength shines through every challenge, from managing monthly infusions to navigating harsh medications with unwavering love. You advocate for better treatments, cheer through countless appointments, and radiate hope for a brighter future.

Your resilience fuels Cure JM’s mission. Thank you for being the rock for your JM kids, teens, and young adults. We see you, we celebrate you, and we’re endlessly grateful for all you do.

Happy Mother’s Day from your Cure JM family—together, we’re unstoppable in giving your kids a life free of JM.

Clinical trials are medical research studies in which patients participate as volunteers. They help researchers learn more about diseases and conditions and develop new treatments and medications. Learn more about clinical trials here.

Below are clinical trials currently recruiting juvenile myositis patients. JDM and JPM patients of various ages may be eligible for these trials. For detailed information about a particular trial, please contact the study team directly.

• CAR-T
• CAR-NK
• ANIFROMULAB

If you have any questions, please contact Cure JM’s Family and Clinician Education Manager at james.tealy@curejm.org.

Join us for May’s Walk Strong to Cure JM events, inspired by families like the Donahues, who walk for Brogan’s courage and a cure.

• Pittsburgh, PA - Saturday, May 17th
• Seattle, WA - Sunday, May 18th
• New York - Sunday, May 18th

Your participation fuels hope—walking shows solidarity, volunteering builds community, and donating ensures progress. Every dollar bridges these gaps, funding safer treatments and better overall outcomes for JM patients. Join us to honor kids like Brogan, whose strength inspires us all.

Register or donate at www.curejm.org/walkstrong, or mail a check (memo: Walk/Your Name) to Cure JM Foundation, P.O. Box 45768, Baltimore, MD 21297.

Walk, volunteer, give—together, we ensure no child faces JM alone.

If you live outside of these areas and would like to walk in your own community, visit www.curejm.org/walkstrong or email sara.echols@curejm.org. Thank you for keeping their future bright!

We’ve reached 40% of our fundraising goal. To follow our progress, click here.

May marks both Myositis Awareness Month and Mental Health Awareness Month, a perfect time to recognize mental health as essential to juvenile myositis care. Treating JM holistically means supporting the mind as much as the body for kids and parents alike. Our community thrives when we address these needs together.

Watch our Mental Health Coordinator, Suzanne Edison, a JM mom and licensed counselor, in a new podcast with JM dads Luke Ryan and Ryan King.

Reflecting on her daughter’s diagnosis, Suzanne sought therapy, learning, “As a parent, you cannot advocate and care for your child if your own well is empty.” Her airplane oxygen mask analogy reminds us that self-care fuels advocacy.

This podcast explores mental health’s role in navigating the daily challenges of JM as a caretaker. Find support and inspiration in our community.

This summer, the Cure JM Family Conference isn’t just a chance to get answers from the world’s leading experts in JM treatment and research—it’s a chance to be seen, heard, and understood.

When you walk into the conference, you’re walking into a community that gets it. You’ll connect with families who know what it’s like to juggle appointments, tests, and treatment—families who can laugh, cry, and cheer with you through every stage of this journey.

And outside the conference doors? Chicago is waiting.

From Navy Pier’s sparkling waterfront and Centennial Wheel to the Skydeck at Willis Tower (with a glass floor view 103 stories up!), your family will have the chance to make unforgettable memories together.

Other family favorites include (before or after the conference):

• Exploring dinosaurs and deep-sea creatures at the Field Museum and Shedd Aquarium.
• Splashing in Maggie Daley Park’s playground and mini golf course
• Catching the Chicago Fire at Soldier Field or the White Sox at home against the D-backs.
• Taking an iconic architecture boat tour through the Chicago River.
• Digging into real Chicago deep-dish pizza (yes, it’s worth it!).

You’ll leave Chicago with more than just knowledge—you’ll leave with hope, connection, and maybe a little Lake Michigan sand between your toes.

Visit www.curejm.org/conference for more information and registration, including limited discounted hotel rates.

The Cure JM Family Conference is happening Friday, June 27th - Sunday, June 29th, 2025, at the Hyatt Lodge in Oak Brook, Illinois, just outside of Chicago. We're inviting all families affected by juvenile myositis.

2025 Online Meetings, In-Person & Educational Trainings - Save The Dates!

We're excited to share upcoming regional and online events that support our community.

This updated page is your single stop for "being in the know" on upcoming chapter events, support meetings, educational training, and more happening in person and online.

May 2025 Online and In-Person Events:

• May 15th at 3:00 PM Eastern - Town Hall on Tapering Medications - Don’t miss our Town Hall with Dr. Kaveh Ardalan, Co-Director of the Duke Children’s Myositis Center. Learn the art and science of tapering medications like steroids and IVIG, crucial for managing juvenile myositis. Dr. Ardalan’s insights will empower you to work with your care team to ease your child’s infusions and flare-ups. Join our supportive community, ask questions, and find hope. Register here.

• May 22nd at 3:00 PM Eastern - Cure JM Grandparent Connect - The Cure JM Grandparent Connect group is a platform for learning and bonding for all grandparents of patients living with juvenile myositis. Connect with other grandparents and learn how to provide support to families along their JM journeys. Register here.



• May 26th at 8:00 PM Eastern - Cure JM Mom’s Connect - Are you a mom navigating the challenges of raising a child with a rare disease? You’re not alone. At Cure JM, we are a “family of families,” and we understand that the journey of caring for a child with juvenile myositis comes with unique challenges, uncertainties, and triumphs. Register here.

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