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Giving Tuesday reminded us again how extraordinary this community is.

Thank you for your kindness, your generosity, and your belief in a better future for kids and families affected by JM. Because of you, research moves forward and families feel supported every step of the way. We are honored to share this mission with you.

Breaking News: Five New Grants Bringing Hope to JM Families

As we continue accelerating work on CAR-T therapy, JAK inhibitors, and other breakthrough opportunities, we are thrilled to announce five new grants that will help families in new ways.

Out of fifteen excellent proposals, Cure JM selected the following projects to fund that will advance JM research, improve care, and bring meaningful support to families across our community.

Here’s a look at what’s coming and what it means for your family:

1. Understanding How Genetics Shape Juvenile Myositis Subtypes

Dr. Shannon O’Connor (Cincinnati Children’s Hospital)

This fellowship supports a future JM specialist as she studies subtypes of JM known as autoantibodies. Dr. O’Connor will study how autoantibodies form and shape disease, with the goal of improving treatment decisions and predicting flares more accurately.

2. The MyoPal Study: Can At-Home Strength Testing Be as Accurate as in the Clinic?

Dr. Brian Feldman (SickKids, Toronto)

MyoPal is a new app that gives families an instant, at-home strength score. If validated, it could help spot flares sooner, reduce clinic time and expand access to clinical trials. Dr. Feldman is leading testing in the U.S., Canada, U.K. and India.

3. Understanding the JM Subtype known as “NXP2”

Dr. Jessica Neely (UCSF)

This study explores whether T-cells contribute to muscle damage in children with the NXP2 subtype. The findings may lead to more personalized care, new treatment pathways, and a clearer understanding of why the NXP2 subtype can be harder to treat.

4. Investigating Immune Triggers of Calcinosis in JM

Drs. Jessica Turnier & Ray Zuo (University of Michigan)

This project aims to learn how immune system factors interact to drive inflammation and calcinosis. We hope this project will reveal early triggers of tissue damage and guide the development of more effective treatments for calcinosis.

5. Designing a Parent Support Program to Reduce Parenting Stress in JM Families

Drs. Tamar Rubinstein (Montefiore Medical Center)

This project creates the first JM-specific mental health program for parents, aiming to reduce stress and burnout, strengthen family resilience, and offer a scalable model that JM centers nationwide can adopt.

These projects move us forward in research, care, and family support, and they are possible only because of the strength and generosity of JM families. Your commitment fuels every step toward a more hopeful tomorrow.

Together, we are building a healthier future for our children. Click here to read more about each project.

Research funded by the Cure JM community helped guide Lucy’s care in a new direction. After months of infusions and side effects with little progress, Lucy’s symptoms worsened and school days slipped away. A turning point came when her doctor recommended a treatment informed by emerging JM research. Her strength returned, her rashes faded, and she began stepping back into her childhood.

Lucy’s family describes her progress as getting their daughter back. They now share their story to help other families understand why research matters and how much is possible when the JM community comes together.

To help drive the next breakthrough, you can make a gift to Cure JM today.

Conversation around CAR-T therapy has been building, and many are wondering how it relates to JM. New research released this fall has shown encouraging results and is helping guide what the future of treatment might hold.

In the video below, Dr. Dawn Wahezi of the Children’s Hospital of Montefiore answers common questions about CAR-T therapy and explains what families may want to know about this emerging treatment.

Watch the Video

Because of the commitment of JM families, researchers are able to explore new approaches like CAR-T therapy and push toward future breakthroughs in care.



You can read more about the recent CAR-T research and why it has brought new hope to the JM community in the article below.

The season of hope is here, and we are already in the heart of the Holiday Challenge!

Watch this short message from Cure JM Director of Community Engagement, Shannon Malloy, as she shares why this time of year matters so much and how easy it is to take part.

Watch the Video

Please join us by becoming a Hope Hero fundraiser. Your participation helps fuel research, support families, and bring real progress to kids with JM.

Learn more at www.curejm.org/hopehero.

Because of the dedication of Cure JM families, researchers have been able to uncover new clues about how juvenile myositis works. A recent study, supported by Cure JM, found unique “protein fingerprints” in the muscle and skin of children with JM. These discoveries help scientists better understand why JM affects every child differently and may guide the development of treatments tailored to each child’s needs.

This is a hopeful step forward for families, pointing to a future with quicker diagnosis and more effective, individualized care.

Read the full article to learn more about this exciting progress in JM research.

To support families through the holidays, Ronda Thorington, Cure JM’s Mental Health Coordinator, is sharing a new series of short holiday videos created just for rare parents. Each 30 to 45 second clip offers a simple way to pause, breathe, and find a little more calm during a busy season.

New videos will be posted every Wednesday in the Cure JM Emotional and Mental Health Support Facebook group. You can also explore Ronda’s latest article where she discusses why boundaries matter during the holidays and offers easy tips to help families protect their energy and focus on what truly matters.

Join the FB group and read the article here.

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