July 2025 Blog
- EveBlackburn
- Jul 22
- 3 min read
Dear Arachnoiditis Community Members,
As President of ACMCRN—a volunteer-led nonprofit organization dedicated to advancing Arachnoiditis research, peer support, and awareness—I’m writing to express my deepest gratitude for your support over the past eight years since our inception.
Today, we stand as a credible and professional entity, having achieved remarkable milestones in our mission.
Our goals of raising awareness, offering support and educational resources, and advancing Arachnoiditis research are not only being met but are expanding each year.
This progress is not the result of our board alone, but of the collective efforts of many dedicated volunteers working together toward shared goals.
Notable Accomplishments
Built a broad network of social media groups that provide peer support, educational resources, and a curated, searchable archive of over 10 years of patient-shared insights.
Completed the largest known Patient-Reported Outcome study with over 1,200 participants, presenting findings at seven professional conferences across the U.S., U.K., and E.U.
Led a global team of research collaborators to develop a comprehensive and impactful research paper based on patient-reported data.
Established a growing Research Team, including international experts in rare disease methodologies, epidemiology, and AI/data platforms.
Developed the ACMCRN International Arachnoiditis Patient Registry, a secure, scalable platform for researchers and patient-led studies.
Prepared multiple upcoming studies that will soon open for patient participation—bringing us closer to effective treatments and improved quality of life for those living with Arachnoiditis.
…and so much more.
Our most comprehensive resource continues to be our evolving website: www.acmcrn.org
💜 Honoring Our Volunteers
I want to take a moment to sincerely thank the 30+ volunteers who have contributed their time and expertise over the last eight years.
Every single person who volunteers is a co-creator of our progress. Your dedication and passion have been essential in advancing our shared mission.
Looking Ahead: Sustaining the Mission
As we look to the future, our priority is sustaining the momentum we’ve built.
We are seeking monthly recurring donations to ensure the longevity of our work. Specifically, we need 25 community members who value what we do and are willing to contribute $25 per month (just $6.25 per week). So far, we have 3 recurring donors, along with some great one-time donations.
This will help cover the cost of our secure Registry platform, which powers our patient-driven research through DigitalCabinet.
Once the Registry reopens—likely before September—you will have the opportunity to contribute your lived experience and health data to guide future research.
Why Research Matters
Arachnoiditis remains largely misunderstood. Physicians often struggle to identify or treat its complex, multi-system symptoms. Very few studies reflect the real experiences of patients—and there are currently no FDA-approved treatments in the pipeline.
That’s why ACMCRN has made our research program the next frontier of our work.
We are committed to producing evidence-based, peer-reviewed research that meets the standards of respected medical journals—so that our voices are heard by the clinicians who need to understand us most.
How You Can Help
Whether you contribute your time or make a donation, your support powers meaningful change.
Want to help?
Sign up to volunteer with ACMCRN! You’ll be able to choose roles that match your skills and availability. We’ll follow up with more info after you submit the form.
Why Donate?
Your gift helps fund research, patient care, and the tools we need to make an impact. Every dollar brings us closer to better understanding and treatment.
Monthly recurring donors become active co-creators in our mission—helping shape the future of Arachnoiditis research, awareness, and patient support.
Our Vision
We strive to be a collaborative hub, reducing silos in the Arachnoiditis community and amplifying efforts worldwide. Our aim is to serve as an umbrella organization—connecting research, awareness campaigns, peer groups, and advocacy work across borders.
With the strength of our community, we can change lives, develop evidence-based treatments, and—someday—find a cure.
Are you with us?
Please donate today.
With gratitude,
Lori Verton
President, ACMCRN
Meet our ACMCRN Board Members:
Lori Verton – President
Eve Blackburn – Vice President, Patient Engagement
Lew Sypher – Tech Advisor & Men’s Group Support Leader
Dr. Patricia Gomes Lournes – Research Team
Dr. Bobby Koneru – Director at Large
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