Reflecting on Arachnoiditis Awareness Month 2026

Message from our President

Dear ACMCRN Community,

As we near the end of Arachnoiditis Awareness Month, I find myself reflecting on what makes this community so extraordinary.

Every story shared, every educational post, every conversation started, and every volunteer who gives their time has helped shine a brighter light on a disease that has remained hidden for far too long. Awareness isn't created by one person, it's built by people around the world who share a common purpose: ensuring that no one affected by Arachnoiditis has to face this journey alone.

This month has been a powerful reminder of what we can accomplish when we work together. From expanding educational resources and strengthening peer support to advancing research and preparing for the relaunch of our Arachnoiditis International Patient Registry, every milestone reflects the dedication of an incredible community united by hope and determination.

I want to extend my heartfelt gratitude to everyone who has helped make this mission possible. To our Board of Directors, research team, healthcare professionals, peer support hosts, outreach coordinators, moderators, graphic designers, volunteers, donors, caregivers, and every member of our community, thank you. Every educational post shared, every support meeting hosted, every question answered, every donation, and every act of kindness brings us one step closer to improving the lives of patients around the world.

I would also like to recognize Linda Bavisotto, Megan Black, Dr. Ishna Singh, Lew Sypher, Scott Groves, Kimberly Brewer, Nicole Abbott, Sara Lewis, Marion Rosen de Haard, Louise Carbonneau Vermeiren, Eve Blackburn, Brian Day, Janette Junker, Enoch Carter, Bob Sheerin, David McHugh, Tich Mukunga, and the many others who generously give their time, expertise, and compassion to ACMCRN. Your dedication is helping build a stronger future for patients and families everywhere.

Although Arachnoiditis Awareness Month is coming to a close, our work is far from over. The momentum we've built this month will continue to drive our efforts as we expand education, advance research, strengthen our global community, and advocate for everyone affected by Arachnoiditis.

While there is still much work ahead, I have never been more hopeful. Together, we are building an organization founded on collaboration, compassion, education, and research. Every voice matters. Every contribution makes a difference. Together, we are creating a future where patients are recognized, supported, and empowered.

Thank you for standing with us and for believing in our mission. We are honored to have you as part of the ACMCRN family.

With gratitude,

Lori Verton, President

Arachnoiditis & Chronic Meningitis Collaborative Research Network (ACMCRN)

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Building the Future: The International Patient Registry

The ACMCRN International Arachnoiditis Patient Registry is one of our most important initiatives to advance research and improve our understanding of Arachnoiditis.

By bringing together patient experiences from around the world, the registry will provide researchers with valuable real-world data to help identify patterns, improve our understanding of the disease, and support future scientific discoveries.

More than a database, the registry represents a global collaboration between patients, researchers, healthcare professionals, and advocates working toward a common goal—improving the lives of those affected by Arachnoiditis.

Development of the registry continues to move forward as we complete the final stages of preparation, including user testing and regulatory review. We look forward to sharing additional updates with our community as we move closer to opening participation.

Every participant will play an important role in helping build a stronger foundation for research, education, and future treatment advances. Together, we are creating a resource with the potential to make a lasting impact for generations to come.

Why the Registry Matters

• Give patients a voice in research

• Advance scientific understanding of Arachnoiditis

• Support future research and discoveries

• Help improve patient care worldwide

Stay tuned! We'll be sharing a special announcement about the ACMCRN International Arachnoiditis Patient Registry as we reach the next exciting phase of this important initiati

Support Our Mission

Every donation helps ACMCRN advance research, patient education, advocacy, and the Arachnoiditis International Patient Registry. Your generosity helps connect patients and caregivers with trusted resources while supporting the collaborative research needed to improve understanding and treatment of Arachnoiditis.

Together, we can bring hope, accelerate progress, and ensure no patient faces this journey alone.

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