Periodic Paralysis Awareness

10/19/2026

October 18–24 is Invisible Disabilities Week.

Not every disability is visible. Some people live with chronic illness, chronic pain, fatigue, neurological conditions, and other disabilities that may not be obvious to the people around them.

Invisible Disabilities Week is an opportunity to raise awareness, challenge assumptions, and help people understand that you cannot determine someone’s health, abilities, or struggles by looking at them.

Someone may look fine and still be managing pain, brain fog, exhaustion, or symptoms that affect every part of their day. They may be working hard to do things that others take for granted, or using every bit of energy they have just to get through the day.

And because their disability isn’t always visible, they may also have to explain themselves, justify their limitations, or deal with the assumption that they’re doing better than they really are.

This week is about making space for those experiences. It’s about listening without judgment, believing people when they tell you what they’re going through, and remembering that looking healthy isn’t the same as being healthy.

You don’t have to see someone’s disability to respect its impact.

If you’ve ever been told you look fine… you belong here. 🤍

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

10/14/2026

10/13/2026

• Periodic Paralysis (PP) refers to a group of Channelopathies and are usually genetically inherited. They can causes sudden episodes of muscle weakness, stiffness, or paralysis. These attacks can affect the whole body or just 1 or 2 limbs.

This set of Channelopathies can cause temporary muscle weakness or paralysis. Things like exercise, stress, anxiety, certain types of food even being cold or hot are a few of the things that can trigger these episodes.

In some cases the heart and respiratory system can be affected.

The Periodic Paralyses involve defects in ion channels. These are gateways that let charged minerals (ions) such as sodium and potassium flow into and out of your cells. This flow of ions is a central part of how your muscles work. In PP, the ion channels sometimes fail, and the muscle cells don’t work correctly.

Depending on the form of PP that you have, the symptoms may be mild or severe, and they may last
from minutes to days. Sometimes, the disease may slowly get worse over time and cause permanent muscle damage.

Types of Periodic Paralysis:

Hypokalemic Periodic Paralysis (HypoPP) formally known as Westphall disease.
-A rare genetic, muscle channelopathy characterized by recurrent episodic attacks of generalized muscle weakness associated with a decrease in blood potassium levels.

Hyperkalemic Periodic Paralysis (HyperPP) formally known as Gamstorp disease.
-A rare muscle disorder characterized by episodic attacks of muscle weakness associated with an increase in serum potassium concentration.

Andersen Tawil Syndrome (ATS)
-A disorder that causes episodes of muscle weakness (periodic paralysis), changes in heart rhythm (arrhythmia), and dysphoric features.

Paramyotonia congenita (PMC)
-A rare non-progressive genetic disorder that affects the skeletal muscles. Affected individuals experience spells of muscle stiffness or when the muscles do not relax after contracting.

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?