Periodic Paralysis Association

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Periodic Paralysis Association

The PPA is on a mission to raise awareness, advance science‑based information, and champion the needs of people living with skeletal muscle channelopathies, including periodic paralysis, non-dystrophic myotonia, and related rare neuromuscular conditions.

10/23/2026

Introducing Every Connection Counts: Peer-to-Peer Support Groups!

Hey there! We know living with a rare condition can feel isolating. So can supporting someone you love. Sometimes, talking with people who understand can make all the difference.

That’s why the Periodic Paralysis Association, in collaboration with Give an Hour and with sponsorship from Xeris Pharmaceuticals, is launching Every Connection Counts, a new virtual peer support program created for our community. These groups are for our community, by our community, bringing people together to create the connection and support we all deserve!

Two groups. Two spaces to connect:
🫂 Patient Support Group | 7–8 PM ET�For people living with periodic paralysis, non-dystrophic myotonias, and related skeletal neuromuscular disorders.

💙 Caregiver Support Group | 8–9 PM ET�For caregivers, family members, friends, and loved ones who deserve a space to connect and feel supported, too.

📅 Mark your calendar! Our upcoming meetings are:
* Thursday, October 29, 2026
* Thursday, November 19, 2026
* Thursday, December 17, 2026
* Thursday, January 28, 2027
Both groups meet virtually via Zoom. Registration is free and required for each meeting.

Come to share your experiences, listen, make connections, make friends, or simply spend time with people who get it. These groups bring together the power of shared lived experience and Give an Hour’s evidence-informed, trauma-informed approach to peer support. Our facilitators receive training to help create a welcoming environment where people can feel heard, learn from one another, and connect with others who understand. There’s no pressure to have the right words or share more than you’re comfortable with. Just come as you are.

Visit the link below to learn more, register for the patient or caregiver group, and complete the brief pre-meeting survey before your first session.
🔗 https://periodicparalysis.org/support-groups/

Every connection counts. 💙

10/21/2026

Research moves us forward. Collaboration helps us get there together🔬

During Periodic Paralysis Conference 2026, the Periodic Paralysis Association hosted a researcher roundtable to bring members of the research community together to share perspectives, discuss challenges, and explore opportunities to move this field forward.

Progress doesn’t happen in a vacuum. Bringing researchers together creates space to ask new questions, tackle shared challenges, build on one another’s work, and identify opportunities that might not be possible working in silos.

For the skeletal neuromuscular channelopathies community including periodic paralysis, non-dystrophic myotonias and related skeletal neuromuscular disorders, every conversation that sparks a new idea, every connection that strengthens collaboration, and every problem we work to solve together brings us closer to a better understanding of these conditions and better outcomes for the people living with them.

This is what Moving Forward, Together means: connecting the people, knowledge, and ideas that can help move research forward.

Thank you to the researchers who joined us and continue to dedicate their time and expertise to advancing progress for this community. There is so much more to learn, and we’re excited about what we can accomplish together. 💙

10/20/2026

Not every disability is visible. But that doesn’t make it any less real.
October 18-24 is Invisible Disabilities Week, a time to recognize the experiences that often go unseen, misunderstood, or dismissed.

For people living with skeletal neuromuscular channelopathies including periodic paralysis, non-dystrophic myotonias and related skeletal neuromuscular disorders, disability can look different from one day to the next, or even from one moment to the next. Muscle weakness, paralysis episodes, fatigue, pain, and the daily work of managing an unpredictable condition aren’t always visible to others.

Invisible disability can mean living with symptoms no one else can see, never knowing how you’ll feel tomorrow, navigating the impact of illness on everyday life, or having your experiences questioned because you don’t look sick. It can mean pushing through pain quietly, having to explain your needs again and again, or carrying struggles that others may never realize are there.

You can’t know someone’s whole story just by looking at them. And no one should have to prove they’re struggling to deserve understanding, accessibility, or support.

To our community: your disability is valid on the days your symptoms are visible and the days they aren’t. Your experiences matter, even when others don’t see what it takes to get through the day. You deserve to be heard, believed, and supported. 💙

This Invisible Disabilities Week, let’s listen a little more, assume a little less, and make room for experiences different from our own.

10/19/2026

Partnership means showing up, listening, and working together to turn what we hear from our community living with skeletal neuromuscular channelopathies including periodic paralysis, non-dystrophic myotonias and related skeletal neuromuscular disorders into meaningful change.

Thank you to Xeris Pharmaceuticals for your continued support of the Periodic Paralysis Association, for partnering with us and bringing your ecosystem of support to Periodic Paralysis Conference 2026, and for making time to connect with our leadership team and discuss shared priorities.

Our community deserves more than awareness alone. We need earlier diagnoses, more research, better clinician education, and access to care that recognizes the realities of living with periodic paralysis. Getting there takes all of us patients, caregivers, advocates, clinicians, researchers, and industry partners willing to listen and work together.
We’re grateful for the conversations, the collaboration, and the commitment to keeping the patient experience at the center of this work. There’s so much potential in what we can accomplish together, and we’re excited to keep turning that shared commitment into meaningful progress for the periodic paralysis community!

The periodic paralysis community deserves meaningful progress, and we’re here to make it happen. We are moving forward, together.

10/16/2026

RESEARCH ACTION ALERT: Help us move the bar on pain research! 💥

If you live with periodic paralysis, myotonia congenita, paramyotonia congenita, or a related skeletal muscle channelopathy, we need your help!

Muscle weakness and stiffness are often at the center of conversations about these conditions, but what about the pain? Aching, cramping, burning, shooting pain, and symptoms that happen during attacks and between them can have a real impact on daily life. Yet pain remains poorly understood and too often overlooked.
That’s why the Periodic Paralysis Association is partnering with Tyler Nelson, PhD, a University of Florida pain neuroscientist and PPA Board Member who also lives with periodic paralysis, and the University of Florida Center for Advanced Pain Therapeutics & Research (CAPToR) on a new research survey.

🔬 Our goal is to recruit at least 100 participants!

Together, we can help researchers better understand the pain our community experiences, how it affects daily life, which treatments help, and where better options are needed.

Research involving these conditions often relies on very small patient groups. Every response helps us build a clearer picture of our community’s experiences and move research forward. Your experience matters!

💻 HOW TO PARTICIPATE
1️⃣ Go to PPA.RarePause.com and create an account.
2️⃣ Verify your email, then go to Events → Periodic Paralysis Conference 2026 and complete your free virtual registration.
3️⃣ Under the conference schedule, select Booths → Pain in Periodic Paralysis Study.
4️⃣ Click “Take the survey” to access the study through REDCap. Your responses will be de-identified.
Already registered? Head straight to the study booth!

🎥 While you’re on RarePause, watch Tyler’s session, “Uncovering Pain Mechanisms in Periodic Paralysis,” to learn more.

📢 Please share this post with others affected by these conditions. The more people we reach, the better we can represent our community!

Let’s make sure pain is part of the conversation. Every response counts. Every experience matters. Help us move the bar! 💚

10/15/2026

Periodic Paralysis Conference 2026 replays are officially LIVE on RarePause!🎉

Whether you attended in person, joined us virtually, couldn’t make it this year, or want to revisit a session that gave you something to think about, you can now watch on your own schedule.
Never registered? You can still access the replays for FREE!

While watching session replays you can:
🔬participate in research (check out the pain in periodic paralysis survey)
🔎ask questions & interact with polls
🗺️explore resources in session descriptions when available
🗣️have session captions translated into your language

📌 SAVE this post for the steps to access your replays.�📲 SHARE it with someone in the periodic paralysis community who needs these sessions, too.
The conference may be over, but the opportunity to learn from one another and stay connected isn’t. We’re so excited to keep this community learning and moving forward, together.
Now tell us: Which session are you watching first? 👇

10/10/2026

TODAY’S THE DAY! 🩵

Periodic Paralysis Conference 2026 is officially here, and we’re so excited to spend the next two days connecting our community, sharing research, and moving forward, together!

Whether you’re joining us in Orlando or tuning in virtually, we want to hear what’s on your mind. Have questions you’ve been waiting to ask? Now’s the time to get them in!

💬 Submit your questions on RarePause! Our Ask the Experts session is your opportunity to ask questions and hear directly from experts in periodic paralysis. Questions submitted through RarePause are the ONLY questions that will be answered during the session. Questions posted in Facebook groups, comments, DMs, or elsewhere on social media will not be collected or answered.

Submitting early also gives others more time to upvote your question, helping the community show which topics matter most.
We can’t wait to learn, connect, and spend this weekend with all of you. Let’s make it a good one! 💙
🔗 Head to PPA.RarePause.com to register for free and to submit your questions. We’ll see you at the conference!

10/07/2026

Have you ever had a question you wished you could ask a periodic paralysis expert?

Maybe it’s something about symptoms, pain, diagnosis, testing, treatment, genetics, triggers, a conference session topic, or one of those questions you’ve had in the back of your mind for years…

Now is the time to ask it!

You can start submitting questions through the Periodic Paralysis Conference 2026 virtual platform before the conference even begins. Getting your question in early gives the community more time to see it, upvote it, and help move it toward the top of the list.

And if your question doesn’t get answered during a specific session, don’t count it out. Questions may also be addressed during our Ask the Experts session Sunday at 2:00 PM ET.

Not registered for the virtual conference yet? It’s free!Head to RarePause.com, create your account, verify your email, and register for Periodic Paralysis Conference 2026.
Then start thinking: What have you always wanted to ask?
Drop your questions in the conference platform and while you’re there, upvote the ones you want our experts to answer, too.
We can’t wait to hear what you’re asking. 💙

10/06/2026

The countdown is on and virtual registration is OPEN!

You don’t have to be in Orlando to be part of Periodic Paralysis Conference 2026. Join us virtually on October 10–11 for two days of learning, research, connection, and community.

This year’s program has SO much to look forward to, including:
🔬 The first-ever PP abstract poster session 🧬 New research and discoveries in periodic paralysis 💬 The chance to hear directly from leading experts and researchers ❓ Opportunities to get your questions answered 🤝 A community that understands what it’s like to live with periodic paralysis

Swipe through this post to look at some of the incredible speakers and sessions you can join virtually.

If you’ve been thinking about registering, this is your sign. Whether you’ve attended the conference before or this will be your first, we’d love to have you with us.
Register virtually today at PPA.RarePause.com.
Let’s learn, connect, and keep moving forward, together. 💙

09/25/2026

September is pain awareness month! What happens when the person studying pain becomes a person living with it?

For Dr. Tyler Nelson, the answer has been a career shaped by curiosity, a rare diagnosis and determination to better understand pain in periodic paralysis. Read this post to learn more about Dr. Nelson’s experience and be sure to attend his session: Uncovering Pain Mechanisms in Skeletal Muscle Channelopathies virtually or in-person at Periodic Paralysis Conference 2026!

Learn more at: https://periodicparalysis.org/conference-2026/
Register at: ppa.rarepause.com

Address

Washington D.C., DC

Website

https://periodicparalysis.org/, https://periodicparalysis.org/conference-2026/, https://periodicparalysis.networkforgood

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