Periodic Paralysis Awareness

10/25/2026

"There is so much more reason for hope today thanks to new research and treatment."

Phillippa's son Dan was diagnosed with Duchenne muscular dystrophy in 1992 - and back then, the treatment and care landscape was very different.

"In those early years, we had weekly access to physiotherapy, occupational therapy, speech therapy and hydrotherapy through our local hospital.

"That joined-up support was invaluable, and it’s something that rarely happens now. [But] there were no clinical trials and steroids were not part of routine care.

"The system isn’t perfect, and in some ways, access to support has become more difficult. But compared with 1992, families are starting from a very different place."

Dan's family struggled with housing - having to move multiple times between council properties that weren't suited to his needs, and he had to travel to a mainstream school that could accommodate his learning and physical needs.

Dan sadly died in 2019 aged 27, but Phillippa has kept advocating for people living with Duchenne in his memory:

"Having Dan took me down a path I never imagined, but I’m proud of all I’ve achieved over the years by his side. He was funny, cheeky, football-mad and an incorrigible flirt who charmed hospital staff as soon as he felt well enough.

"I’m grateful I can continue sharing Dan’s legacy, and use our experiences to help other families."

Read more: https://loom.ly/aiPqt2M

10/22/2026

Clinical Trial Opportunity for RYR1-Related Myopathy

A Phase 2 clinical trial is evaluating Surlorian (ARM210, S48168), an investigational therapy for adults with autosomal dominant RYR1-Related Myopathy (RYR1-RM).

Eligible participants may be 18 - 65 years old, have a confirmed genetic diagnosis, and be able to walk 10 meters with or without a cane.

The international study is currently enrolling at multiple locations in Europe.

👉 Learn more about the study https://clinicaltrials.gov/study/NCT07560020?term=NCT07560020&viewType=Card&rank=1

10/21/2026

The 2027 MDA Clinical & Scientific Conference agenda is here! 🧬🔬

Join the conversation as researchers, clinicians, industry leaders, and advocates come together to explore advances in AI, gene therapy, patient data, clinical trials, and treatments for neuromuscular diseases.

✨ The four-day conference will also feature the latest research findings, novel therapeutics, and late-breaking scientific developments.

📅 March 21–24, 2027
📍 Rosen Shingle Creek, Orlando, Florida

🔗 Explore the full agenda and see what’s on the horizon: https://www.mda.org/press-releases/mda-announces-2027-clinical-scientific-conference-agenda

10/18/2026

Periodic Paralysis Pain Study

Clinical and genetically diagnosed patients worldwide are welcome to participate!

Dr. Nelson at the University of Florida is conducting a research survey to better understand pain in periodic paralysis, myotonia congenita, paramyotonia congenita, and related disorders.

This survey looks at pain symptoms, triggers, daily impact, and treatment effectiveness. You don’t need a genetically confirmed diagnosis to participate!

Who can participate: from all countries are welcome to participate in this scientific research survey, including those outside the United States!

Time: 45–60 minutes

Goal: At least 100 participants

Survey: https://redcap.link/periodicparalysis

Thank you, your participation will help to better understand how pain affects people living with periodic paralysis.

**If you've had genetic testing, please have your specific mutation/variant information available before starting this survey. The study is also interested in whether pain symptoms differ depending on where a mutation occurs within the ion channel.

This study is being conducted by researchers at the University of Florida Center for Advanced Pain Therapeutics & Research (CAPToR) in collaboration with the Periodic Paralysis Association.This survey asks about your periodic paralysis or skeletal muscle channelopathy and your experience with pain.....

10/17/2026

Join us and the Periodic Paralysis Association on November 11 at 11:00 AM ET for:
“Periodic Paralysis & RYR1 Mutations: Understanding the Connection”

Hear from Dr. Stephen Cannon, Dr. Emma Matthews, and Cienna Ditri, with Dr. Tyler Nelson serving as moderator, as they explore the connection between periodic paralysis and RYR1 mutations, current research, and what it means for patients and families.

💻 Don’t miss this informative discussion!
Register here: https://us02web.zoom.us/webinar/register/WN_YKJESJ2GTjGCBUruQO1Q7Q

06/07/2026

2026 Periodic Paralysis Conference – Register Now!

2026 Periodic Paralysis Conference on October 10–11, 2026, in Orlando, Florida at the Hilton Lake Buena Vista(hosted by the PPA).

This is the largest gathering of its kind for patients, families, clinicians, and researchers focused on periodic paralysis.

Two ways to participate:
• In-person attendance
• Live stream (virtual attendance!)

Registration details:
• Registration is officially open now
• Early-bird pricing available until July 1st
• Final registration deadline: August 31st

🔗 Register here:
https://periodicparalysis.org/conference-2026/

If you’ve attended past conferences, please share your experiences and thoughts!

What did you find most valuable? What would you recommend to first-timers? Any tips or highlights you’d like to pass along?