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.

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

09/20/2026

Today is the last day to register for Periodic Paralysis Conference in person! 🚨
Here’s what you’ll get to be part of in Orlando:
• Hear from periodic paralysis experts • Ask questions during sessions and Q&As • Check out our first research poster session
•Sharelunch together at no cost on Saturday and Sunday  • Participate in research  • Meet other people with PP • Join our in-person support group • Catch up with people you know and meet people from the pp community for the first time
📍 Orlando, FL 📅 October 10–11
In-person registration closes tonight. If you’re planning to come, today is the day to register.
Learn more at: https://periodicparalysis.org/conference-2026/
Register at: ppa.rarepause.com

09/18/2026

In-person registration for the 2026 PPA Conference closes September 20! 💙

If you’ve been thinking about joining us in person, this is your reminder to get registered. We have a full weekend planned: from connecting with others who actually understand life with periodic paralysis, to learning from leading experts and researchers, participating in research, our first-ever in-person PP support group, and our first research poster session!
We’d love to see you there.

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

09/16/2026

We’re so excited to bring the periodic paralysis community together again for Periodic Paralysis Conference 2026!

This year’s theme, Moving Forward, Together, reflects everything we’re working toward: more research, more opportunities to learn, and more ways to connect and support one another.
From our first research poster session and new research opportunities to patient and caregiver support groups, an adaptive fashion panel, and a performance by Auracle featuring Maya, who lives with periodic paralysis, there’s so much to look forward to!

Join us October 10–11 in Orlando, Florida. We already have 80+ people registered, and we can’t wait to see you there!
In-person registration closes September 20.

Financial assistance is available on the PPA website. If you are still reading, you can use code LEVELUP for $25 off.
Learn more here: https://periodicparalysis.org/conference-2026/

09/15/2026

It’s the final countdown: Periodic Paralysis Conference 2026 is almost here and there are only 5 days left to register to attend in-person!
Join us October 10–11 in Orlando, Florida, or tune in from wherever you are for two days of education, connection, and community!

Here’s what you can look forward to: 🧬 The latest research and treatment approaches
🔬 Be part of groundbreaking PP research  🩺 Learn from leading PP experts and researchers 💬 Connect with others living with periodic paralysis and their families 🎤 Hear patient perspectives and take part in interactive sessions
✨Join our first in-person support group  💙 Meet your PP community and make connections that last beyond the conference!

Whether you’re newly diagnosed, have been living with PP for years, are a caregiver, or work in healthcare or research, we can’t wait to see you there.
📍 Hilton Orlando Lake Buena Vista – Disney Springs 📅 October 10–11, 2026 💻 Join us in person or via livestream!
Ready to be part of it? Register today and join us for a weekend dedicated to learning from each other, connection, and community.
🔗 Registration details in the link bio on Instagram or ppa.rarepause.com

09/14/2026

Attention: London, we can’t wait to see you TOMORROW! 🇬🇧💙‼️

Join PPA Board of Directors Member, Leslie Wengler as she hosts a periodic paralysis meet-up at the Riverside Terrace Cafe. It will be an afternoon of connecting with the periodic paralysis community that you won’t want to miss!
Whether you’re coming to meet others living with PP, pick up your PPA anesthesia ID card and tote bag, or learn more about getting involved with PPA, we’d love to have you there!
📍 Riverside Terrace Cafe, Royal Festival Hall 📅 Tomorrow, September 15 ⏰ 15:00–17:00
RSVP in the comments if you’re joining us! We’re so excited to bring our community together in London.

09/04/2026

London, come connect with your PP community! 🇬🇧💙
Join Leslie Wengler for a casual PPA meet-up on September 15. It’s a chance to:
✨ Meet other people living with periodic paralysis 🎟️ Get an anesthesia ID card and PPA tote bag from Leslie 📚 Learn about Periodic Paralysis Conference 2026 and what to expect 💻 Get help signing up for RarePause 🤝 Learn how you can get involved with PPA
📍 Riverside Terrace Cafe, Royal Festival Hall 📅 September 15 ⏰ 15:00–17:00
Come for the conversation, stay for the community. RSVP in the comments, we would love to see you there! 💙

09/01/2026

Periodic Paralysis Conference 2026 is just around the corner, and if you’re planning to join us in person at Hilton Lake Buena Vista- Disney Springs, October 10–11, now is the time to register! 💙

Register by September 1 to secure your seat and enjoy conference perks, including: 🩺 An anesthesia ID card 👕 Exclusive conference T-shirt 🍽️ Lunch on Saturday & Sunday
💗Attending our first in-person support group  🤝 And so much more!
Late registration closes September 20, so don’t wait!
We can’t wait to bring our community together for two incredible days of connection, education, research, advocacy, and most importantly each other.
📍 Orlando, FL 📅 October 10–11, 2026
Register now at PPA.RarePause.com

Who are you most excited to see in Orlando?

08/29/2026

🇬🇧 PPA London Meetup: Help Us Choose the Location! 🇬🇧
Are you living with periodic paralysis (PP) in or around London? 💙

The Periodic Paralysis Association is planning a casual meetup in London, hosted by PPA Board Member Leslie Wengler, and we’d love your help choosing the best location!
📅 Possible dates: • September 9 • September 10 • September 14 • September 15
📍 Location: Somewhere in London or within 1 hour by public transportation from London
Come connect with people who get it! 💙
✨ Meet other people living with periodic paralysis: connect with others who understand the challenges and experiences of PP ✨ Make new friends and build connections with your local PP community ✨ Learn about the upcoming conference and what to expect ✨ Get help signing up for RarePause and learn how you can get involved
✨ Get resources

We need your help! Where should we meet?
If you’re interested in joining, please comment with:
1. Which date(s) work best for you
2. Your recommendation for a meetup location that’s easy to reach by public transportation

Let’s find a spot that works for as many people as possible!
💙 Whether you’re newly diagnosed, have been living with PP for years, or simply want to meet others who understand we’d love to see you there!

Please share this information with anyone in the London area living with periodic paralysis who might like to attend. See you soon!

08/27/2026

As the PPA grows, so does our responsibility to protect our community, create better opportunities for connection and research, and build sustainable support that extends beyond one weekend.

The updated Periodic Paralysis 2026 Conference FAQ section on our website answers questions and provides more information about virtual access and RarePause, privacy and patient information, research opportunities, registration fees, and why we chose Florida for Periodic Paralysis Conference 2026.

Our goal has always been the same: to bring the periodic paralysis community together, support science based information and research, expand access to reliable resources, protect the people who trust us, and keep moving forward together.❤️

We’re always happy to answer specific questions directly at [email protected] ✨
We can’t wait to see you in Orlando October 10-11 for Periodic Paralysis Conference 2026!
You can learn more at: https://periodicparalysis.org/conference-2026/
Find more in depth FAQs at: https://periodicparalysis.org/conference-2026/faq-2/
Register at: rarepause.com

Address

Washington D.C., DC

Website

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

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Thelma D. Jones Breast Cancer Fund
400 I Street, SW

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