In This Issue:

🎈Help Us Protect Critical JM Research - Executive Director Update

🎈2025 Cure JM Advocate Scholarships - Application Open

🎈2025 Clinical Trials Enrolling

🎈"Why I Walk" Volunteer Spotlight - Sammie Fish

🎈2025 Walk Strong to Cure JM - Walking for a Brighter Future!

🎈2025 Cure JM Family Conference Overview

🎈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.

Your support has already made waves in the rare disease community. In February, over 2,000 of you signed Executive Director Jim Minow’s open letter to HHS Secretary RFK Jr., fighting for the preservation of NIH and FDA research partnerships vital to our progress. That letter has been shared through targeted outreach to Congress and with top administration leaders. This is a testament to our community’s collective voice. But our fight has only just begun. NIH budget cuts threaten to stall decades of progress, critical research we’ve helped fund that has led to life-saving outcomes.

In an effort to preserve key research partnerships, we have launched the Cure JM Emergency Research Fund to bridge funding gaps to ensure the most critical research doesn't stall. Every dollar keeps clinical trials and breakthroughs alive for our families.

You can support our fight by donating at www.curejm.org/emergencyfund or by sending a check to P.O. Box 45768, Baltimore, MD 21297 (memo: Emergency Fund)—ensures research doesn’t stop. Together, we can ensure our life-changing progress doesn't stall.

Thank you for standing with us, and to those who’ve contributed already, we’re deeply grateful.

We are excited to share a special educational support opportunity for collegiate JM patients who are using their own experiences to lead and inspire.

The Cure JM Advocate Scholarships provide a unique educational opportunity honoring the founding members of Cure JM’s inaugural Medical Advisory Board and pioneering JM researchers and clinicians, Drs. Lauren M. Pachman, Ann M. Reed and Lisa G. Rider.  

These scholarships are generously funded by founding board members and doctors.

The Cure JM Advocate Scholarships are intended to be awarded to three deserving students with juvenile myositis who:

• Impact the juvenile myositis community through their Cure JM volunteer and leadership efforts
• Inspire the juvenile myositis community by overcoming adversity while empowering others to do the same

Three (3) scholarship award recipients will be selected in 2025. The scholarships are open to undergraduate, graduate, and medical school students.

"The Cure JM scholarship honoring Dr. Rider helped me access new technology to advance my studies. As a third-year PhD student in Social Psychology, I’m preparing for my dissertation on health behavior decision-making. This award lets me focus on that work and means a lot because Cure JM and Dr. Rider shaped my path. I’m studying this because of their support, and I’ll keep advocating. Thank you, Cure JM!"

Maya Rogers (2024 Cure JM Advocate Scholarship Recipient)

To learn more about this program, eligibility requirements, and full details, click the button below. The application period is open through May 10th.

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.

In honor of Volunteer Recognition Month, we’d like to shed light on the impact that Sammie Fish, a young adult living with JM, is making in her community. Sammie embodies the spirit of what “Walking for a Brighter Future” means for JM patients like her.

Sammie walks for and with her Cure JM community because juvenile dermatomyositis struck at 14. Now, Co-Chair of Ohio’s chapter with her mom, she’s turned a tough diagnosis into purpose. Despite a doctor’s warning that she would only have a small chance at remission, Sammie graduated college, started teaching, and kept playing softball. She inspires and mentors kids like her young JDM friend, bonded by “love and hope” bracelets. Inspired by community support, she pushes for steroid alternatives and hopes for a cure.

Join Sammie at Walk Strong to fund research and give JM warriors a brighter future. Read Sammie's full story below.

Hundreds of Cure JM families and friends are coming together in their local communities to walk together for a brighter future! 

You can join the fight by taking important steps towards progress and a cure!

Walk Strong events feature fun and friendship as our families celebrate the power of community and walk for progress. There is fun for the whole family, including children, teens, and young adults.

We'd like to thank all of our families and communities who are walking with us. Your steps propel our progress!

2025 Walk Strong events:  RSVP here to join a walk in your region!



• Reno, NV - Sunday, April 27th
• Cincinnati, OH - Sunday, April 27th
• Dallas, TX - Saturday, May 3rd
• Pittsburgh, PA - Saturday, May 17th
• Seattle, WA - Sunday, May 18th
• New York - Sunday, May 18th
• Chicago, IL - Sunday, June 29th
• Washington, D.C. - Saturday, September 20th
• Raleigh-Durham, NC - Saturday, September 27th
• Boston, MA - Sunday, October 5th
• Houston, TX - Sunday, October 5th
• Austin, TX - Saturday, October 11th
• Nashville, TN - Saturday, October 18th
• Northern California - Saturday, October 18th

Don’t see your town listed? Contact Sara.Echols@curejm.org to learn more about walking from home or starting a walk.

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.

That means you're invited!

Join us to spend three days with world-class JM researchers, engage in interactive sessions for all ages, and make friendships that last a lifetime.

Join 100+ families and world-leading JM researchers for a spirited weekend of sharing and connecting in an interactive setting.

What You Can Expect:

• Join live sessions on the latest updates from world-renowned researchers and physicians, including Cure JM’s Medical Advisory Board.

• Connect with other JM families and create lifelong bonds. 

• Engage in interactive activities for JM kids and siblings of all ages, including activities for patients and siblings aged 18-30.

• Attend our Volunteer Celebration Banquet & Auction.

• Join our annual National Walk Strong to Cure JM, our flagship fundraising and community event.

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

We look forward to seeing you in Chicago, June 27th-June 29th, 2025, for the 15th Cure JM Family Conference!

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.

April 2025 Online and In-Person Events:

• April 17th at 3:00 PM Eastern - Cure JM Dad's Connect - Join us for an empowering Dads' Connect call, a dedicated space where fathers of children with rare diseases can come together, share their experiences, and support one another. Join us to share strength, stories, and strategies for navigating this journey. Register here.

• April 24th 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.

• April 24th at 8:00 PM Eastern - Town Hall on Resilient Parenting - Parenting a JM warrior is tough, but you’re not alone. Join Suzanne Edison for a Town Hall with Ronda Thorington, a pro counselor and parent coach, to get real tools for handling stress and building family bonds. We’ll dive into the Resilient Parent Toolkit, plan for appointments, and talk about self-care. Register here.

• April 27th at 5:00 PM Eastern - Advocates Council - Join our Advocates Council Meeting where we invite young adults to share their experiences and move forward ideas to support Cure JM’s mission to improve treatments and quality of life for all JM patients. Your voice matters! Please register and share your thoughts with us. Register here.



• April 28th 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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