Myositis Insights

This week's must-know community updates, latest research & events

April 02, 2025 • Estimated Reading Time: 1 minute

Latest Research

Recent research emphasizes the role of myositis-specific antibodies in diagnosing and differentiating myositis conditions. These antibodies help in understanding diseases like inclusion body myositis, as seen in studies involving specific antibodies like anti-cN1A Tay et al. (2025). They are crucial for targeted treatment approaches.

Myositis-specific antibodies are linked to distinct clinical features, such as skin rashes in dermatomyositis and increased cancer risk. Understanding these specificities is key to managing the disease effectively. The role of autoantibodies continues to evolve, offering new insights into these complex autoimmune conditions.

Clinical Trials

This is a list of upcoming or ongoing clinical trials that are actively recruiting and have been listed or updated in the last two weeks:

A Study to Evaluate Safety and Efficacy of Empasiprubart in Adults With Dermatomyositis

Phase 2 Study of Rapcabtagene Autoleucel in Myositis

A Study to Document and to Further Describe Long-term Safety and Effectiveness of Palovarotene in Participants With Fibrodysplasia Ossificans Progressiva (FOP)

Renal Manifestations During Idiopathic Inflammatory Myopathies

View the full list of clinical trials →

Community News

Myositis Support and UnderstandingMar 30, 2025

🎉 AMAZING UPDATE — $2,626 raised by 50 generous donors so far in our MSU 10-10-10 Campaign! 🎉

And thanks to a generous matching donor, every single dollar is still being MATCHED — turning $2,626 into $5,252 just like that! 🙌💥

But here’s a powerful thought:

👉 What if each of our 50 donors asked just 10 people in their family or personal network to give just $10?

That would mean 500 more donations — and another $5,000 raised (which would be DOUBLED to $10,000 with the match)! 🤯💜

That’s the power of this moment. The power of you.

🩺 What does your support make possible?

💜 Direct patient financial assistance – urgent help for things like treatment travel, mobility aids, and medical bills

🔬 Right Now Research – working toward faster diagnoses, better treatments, and ultimately, a cure

📚 Education and resources – for patients, caregivers, and the doctors who care for them

🤗 Emotional support and advocacy – because no one should face this alone

🌍 A lifeline for those battling a rare, often misunderstood disease

Let’s keep the momentum going.

✅ Give what you can — $10, $50, $100

✅ Then ask 10 people in your life to do the same.

📅 We have until April 30 to hit our $25,000 goal — unlocking $50,000 in total with the match. We still need to raise $22,374 — and you can help us get there.

Let’s show what a community with heart can do. 💪💜

🔗 https://bit.ly/msu101010

The Myositis AssociationMar 26, 2025

Patients and patient organizations play a pivotal role in myositis research. Those who live with the disease are, in fact, the experts on myositis, and increasingly they are actively involved in academic research, national and international myositis research organizations, industry-sponsored patient advisory councils, and government supported research initiatives. The value of this expert insight is gaining greater recognition, allowing for more patient-centric projects, focusing on more relevant outcomes, and improving the quality of life for those who live with myositis worldwide.

Read more: https://www.myositis.org/blog/patients-make-a-difference-in-myositis-research/

Myositis Moon WalkMar 31, 2025

T-Minus 33 Days Until The Myositis Moon Walk!

Planning for the Myositis Moon Walk is coming together nicely. We still have several items on the wishlist for the kids goody bags. If you'd like to help, please check out our Amazon Wish List below. Thanks for making this a wonderful event.