ACMCRN

01/11/2026

Do we have any members here interested in going to DC for this event?

Let me know if you plan to go!
verton@acmcrn.org

Register now!

Registration is now open for Rare Disease Week 2026 on Capitol Hill. This free multi-day event, hosted by the Rare Disease Legislative Advocates, an EveryLife Foundation program, brings together rare disease advocates from across the country to make their voices heard. Participants will be educated on policy proposals impacting the rare disease community and provide opportunities to advocate directly to Congress for policy change.

New for 2026, we are expanding our agenda on Tuesday, February 24 to include dedicated sessions with community leaders and experienced advocates to help attendees craft and amplify their personal rare disease stories. We highly encourage everyone to attend the new Share Your Story Day engage and learn with their fellow advocates.

Thank you for making an incredible impact on rare disease policy change. We look forward to seeing all of you this February on Capitol Hill!

Register for Rare Disease Week 2026 using the following link: https://hubs.li/Q03ZQ_bb0

12/05/2025

🧠✨ Hack Your Brain, Hack Your Pain — This Friday at 7 PM EST!

Join us for a transformative workshop designed to help you retrain your brain, calm your nervous system, and build practical tools for managing chronic pain.

Whether you're new to mind–body strategies or looking to deepen your practice, this session offers approachable techniques you can start using immediately.

📅 Friday, December 5th
⏰ 7:00 PM EST
🎥 Live on Zoom

🔗 Register: https://www.acmcrn.org/event-details/hack-your-brain-hack-your-pain-2025-12-05-19-00

👉 If you’d like to explore related tools before the workshop, watch our new YouTube upload:

Extended Grounding for Chronic Pain & Complex Trauma
https://youtu.be/Cff7YHQjk_A?si=5o6CuobabQbUxvvA

Let’s learn, grow, and heal together. 💛

https://wix.to/a1c7tvn

Join David McHugh for evidence-based strategies to help calm the nervous system and manage chronic pain.

11/30/2025

Insomnia? Not really.
Painsomnia, now that is the more nuanced experience of those living with .

, let's try this anyway, because we won't see information specific only to for this problem.

can be done in bed, sitting or standing.
Add some deep beats music.

Why not make it your own study? Keep track of your pain score, how long it takes to fall asleep, and whether you've done tai chi that day. Add a column for # of times you were awakened. You may even add another to mark if you remember dreaming or nor.

After 3 or 4 weeks, get an AI agent to help you turn that data into a roadmark. Is it helping? Then make it a new habit in your daily life.

As the years pass, it can become harder to get a good night's rest.

11/28/2025

Here's a very helpful topic: How Caregivers can Support SIH patients...also known in community expressed as

🎥𝐇𝐎𝐖 𝐂𝐀𝐑𝐄𝐆𝐈𝐕𝐄𝐑𝐒 𝐂𝐀𝐍 𝐒𝐔𝐏𝐏𝐎𝐑𝐓 𝐒𝐈𝐇 𝐏𝐀𝐓𝐈𝐄𝐍𝐓𝐒
Recorded video from the Patients’ Session at the 2nd Canadian Spontaneous Intracranial Hypotension (SIH) Conference (May 31–June 1, 2025.)
Presented by 𝐀𝐦𝐲 𝐒𝐭.𝐀𝐮𝐛𝐢𝐧, parent and caregiver to a child with spinal CSF leak.

🔗▶️ https://youtu.be/g1dn8E4ci0I

11/26/2025

Discover the calming magic of Warm Twig Tea (Kukicha)! 🍵 Perfect for a cozy moment, this tea helps balance your mind and body while supporting nervous system relaxation. 🌱 Take a sip and let your harmony journey begin. Read more: https://wix.to/WRoiF5x

Welcome back to "Unlocking New Possibilities: A Holistic Path to Well-being with ACMCRN."Our journey into holistic self-care begins with one of the simplest, yet most powerful, macrobiotic tools: the daily cup of warm tea.A Note on Michio Kushi: The Serious Study of FoodOur foundation comes from the...

11/22/2025

Spinal cord stimulators are often suggested for chronic pain — but for those living with adhesive arachnoiditis, the picture is far more complicated.

Our latest blog post breaks down the real-world evidence, the differences between paddle and percutaneous leads, the potential risks, and what today’s new technology can (and can’t) offer.

💡 If you’ve ever been told you’re a “candidate” for an SCS — or you’re unsure what questions to ask — this is a must-read.

Happy Holidays, all of us at ACMCRN.org

https://wix.to/Ov9ccNJ

11/21/2025

✨ New 7-Part Blog Series Begins Today!

We’re excited to share the first post in our new series, Beyond the Diagnosis: Reclaiming Your Well-being with Mind-Body Wisdom.

This opening article explores simple, accessible mind-body tools—breathwork, gentle movement, mindfulness, and Eastern-inspired practices—to help support your well-being with Arachnoiditis right now. Discover more at

Living with Adhesive Arachnoiditis can feel overwhelming. While research continues, healing isn’t only about future treatments—there are practical ways to support your well-being right now. Our new series, Unlocking New Possibilities, explores simple mind-body tools, gentle movement, breathwork,...

10/22/2025

🎥 New on ACMCRN’s YouTube Channel!

We’re proud to launch our growing video series with the release of Hack Your Brain, Hack Your Pain: 5-Minute Grounding for Pain Relief, hosted by Scott Groves and guided by Trauma Coach David McHugh.

In this short, powerful session, David walks viewers through a simple grounding technique to help calm the body, reduce pain, and reset the nervous system — anytime, anywhere.

🧠 Hack Your Brain, Hack Your Pain is part of ACMCRN’s ongoing mind-body learning series, where you’ll discover practical tools for regulating the nervous system, exploring neuroplasticity, and building resilience through community.

💬 Join the conversation, access recordings, and register for upcoming sessions at:
👉 ACMCRN.org/event-list

💡 Or sign up for the Hack Your Brain, Hack Your Pain private group:
👉 ACMCRN.org/groups

🔗 Watch now on YouTube: https://youtu.be/t8nC7gmg0RA

And don’t forget to subscribe to our new channel for more educational sessions, guided exercises, and updates from ACMCRN.

In this special session of Hack Your Brain, Hack Your Pain, host Scott Groves is joined by Trauma Coach David McHugh for a practical, five-minute grounding e...

10/17/2025

Don't miss this incredible opportunity! Tonight, Friday at 7pm EDT !

HACK YOUR BRAIN to Hack your Pain, with special guest,
Dr Collette is a senior clinical psychologist specialising in pain and PTSD syndromes.

Join Scott Groves as he hosts this special meeting!

https://us06web.zoom.us/j/83037941722

07/17/2025

We have had 3 new Recurring Donors sign up!
Thank you!
Now, can we find only 22 more?
Thanks for helping us advance Arachnoiditis care and research!



!

07/17/2025

Feeling disconnected?
Join Rida Viljoen—Resilience & Personal Growth Life Coach & Chronic Warrior—for a live peer workshop:
🗓️ July 29 | 🕑 2PM EST
Come as you are.
🔗 https://www.acmcrn.org/event-details/peer-coaching-workshop-with-rida-viljoen

07/11/2025

Be part of history. Help us open the first International Arachnoiditis Patient Registry. If 25 people give $25/month, we can launch it—and get one step closer to real treatment options and a cure. One-time gifts matter too. Will you be one of the 25? Donate at acmcrn.org/donate.