In 2019, members of the myositis community challenged a long-standing belief that myositis was not associated with significant pain. Patients shared their experiences and asked an important question:

“If so many of us experience pain, why isn’t it being studied?”

That question became the foundation of MSU’s ‘Right Now’ Research initiative – a patient-led approach that transforms lived experience into meaningful research priorities.

  • 2019 Community Call to Action: patients, caregivers, and advocates identified pain as a major unmet need and call for research that reflected real-world experiences
  • 2022 Pain in Myositis Published: Nearly 500 participants helped demonstrated that pain is a significant and under recognized burden across myositis subtypes. Impact – Challenged long-standing misconceptions and elevated pain as an important clinical and research priority.
  • 2022 Patient Burden of Disease Initiative: MSU expanded its research effort to better understand the daily challenges, symptoms, treatment experiences, and quality-of-life impacts faced by people living with myositis. Impact – Provided a broader picture of unmet patient needs and helped identify priorities for future research and patient-focused drug development activities.
  • 2023 Caregiver Burden Study: Research expanded beyond patients to better understand the experiences of family members and caregivers. Impact – Demonstrated that myositis affects entire families and highlighted the emotional, physical, and social challenges caregivers face.
  • 2024 Patient Perspectives and Regulatory Engagement with the FDA – MSU contributed patient perspectives through initiatives such as a 2022 FDA Listening Session on Adult Dermatomyositis, and in 2024 co-hosted an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting and expanded research efforts examining unmet needs in specific myositis populations. Impact – Ensured that patient experiences help inform future therapy development and regulatory discussions.
  • 2025 Building Research Partnerships – MSU expanded collaborations with academic researchers through grants and research initiative. Impact – Increased opportunities for patients to participate in a dn help shape future research.
  • 2026 Expanding there Research Ecosystem – Today, Right Now Research is evolving into a broader patient-led research ecosystem that includes:
    • 🧬 Mito-Myo Translational research exploring mitochondrial dysfunction and potential therapeutic approaches in Inclusion Body Myositis.
    • 🔬 Patient-Led Research Hub A centralized platform connecting patients, caregivers, researchers, publications, educational resources, and research opportunities
    • 🌐 Myositis Patient Connect A digital engagement platform designed to facilitate patient participation, community insights, research recruitment, and future real-world data initiatives.

Research Impact at a Glance

👥 1,600+ Community Voices Engaged

📚 5+ Peer-Reviewed Publications

🔬 4+ Major Research Studies

💰 $100,000+ Research Funding Supported

🏛 2 FDA Patient-Focused Drug Development Initiatives

Looking Ahead

The future of myositis research depends on meaningful collaboration between patients, caregivers, clinicians, researchers, and industry partners.

MSU remains committed to ensuring that research not only seeks cures for tomorrow but also improves the lives of people living with myositis today…because the most important research questions often begin with the patient voice.