Periodic Paralysis Association

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Periodic Paralysis Association

The PPA is on a mission to foster awareness and promote science-based information. https://periodicparalysis.org/donate/

04/17/2026

World Periodic Paralysis Day might have been on March 23rd, but ripples of passion from people in this community are turning into waves of change!

Staci Armbrust was recently invited to the Capitol of Nebraska to receive Nebraska’s 2026 proclamation honoring World Periodic Paralysis Day in person from Governor Pillen and to give remarks about the importance of World Periodic Paralysis Day! The PPA would like to congratulate Staci on her passion, hard work, and advocacy.

State Proclamations are a big deal raising awareness for the first time at the State level for periodic paralysis! They not only honor 3/23 as World Periodic Paralysis Day, but help show the local constituent’s need for better awareness and funding for periodic paralysis research when the PPA meets with House and Senate representatives in Washington DC. Together these initiatives help power progress for periodic paralysis!

Would you like to power up periodic paralysis like Staci? Keep an eye out for details on how you can get involved in the Periodic Paralysis Association’s Advocacy Program and save the date for the 2026 Periodic Paralysis Conference October 10 & 11 at the Hilton Lake Buena Vista in Florida.

04/07/2026

Did you know that today is World Health Day?

The theme of World Health Day 2026 is: Together for health. Stand with science. At the PPA we believe that connected, we are strong! Scientific collaboration and progress is only possible when we work together. The PPA is proud to bring together a community of researchers that create groundbreaking research, clinicians delivering the care and support patients need, advocates creating change, and patients and families with lived experience to power progress for periodic paralysis together. Today we celebrate the power of collaboration and all of the researchers powering progress for periodic paralysis, especially Dr. Stephen Cannon, Dr. William Harr, Dr. Karen Suetterlin, Dr. Mark Rich, Dr. Heather Allen, Dr. Tyler Nelson, Alaina Waters, and Dr. Aida Calderon-Rivera.

04/03/2026

World Periodic Paralysis Day 2026 might have already passed, but the periodic paralysis research team from Khanna Lab at the University of Florida is powering up periodic paralysis with their research every day!

One of the PPA’s newest board members, Dr. Tyler Nelson not only is leading the way researching pain and periodic paralysis, but lives with hyperkalemic periodic paralysis with non dystrophic myotonia himself! The team spearheading this groundbreaking research is from left to right Heather Allen, Tyler Nelson, Alaina Waters, and Aida Calderon-Rivera.

Want to learn more about the connection between pain and periodic paralysis? Watch this space for registration for the 2026 Periodic Paralysis Conference hosted by the Periodic Paralysis Association coming in May! The conference will be held October 10 & 11, 2026 at the Hilton Lake Buena Vista in Florida!

04/01/2026

The Periodic Paralysis Association does not normally host a conference every year, but 2026 is different… as we prepared to announce the big event, an anomaly was triggered. When Laser flew over Chicago celebrating World Periodic Parlaysis Day, a rogue beam hitting The Bean refracted and mousified Dr. Cannon! 🐭 We aren’t exactly sure who else this anomaly has impacted or how far the mousification has spread across the PPA community, but we will be sharing updates as we assess the team.

The theme of WPPD is uniting the global community to power progress for periodic paralysis—and we need that unity now more than ever to reverse the glitch before the conference.

Over the coming months, we’ll be unlocking a series of community challenges. By checking in and taking action, your engagement will help generate the power needed to reverse the effects and demousify Dr. Cannon and the rest of the team in time for the opening remarks.

🗓️ Periodic Paralysis Conference 2026 Oct 10-11, 📍Hilton Lake Buena Vista

The rescue mission is loading. Save the dates, watch this space for your first update, and standby for your mission! ⏳

03/31/2026

A meaningful step forward for the periodic paralysis community.

Last week to celebrate World Periodic Paralysis Day the Periodic Paralysis Association held 2 virtual hill days uniting leaders in the periodic paralysis community to power progress for periodic paralysis.

Why do hill days matter?
-power our voices in congress
-shine light on urgent pp community needs
-fuel momentum for real policy change
-elevate patient perspectives that spark action
-put periodic paralysis on the national agenda
-remove barriers through direct advocacy

What are we asking?
We asked that awareness, research, and advocacy for periodic paralysis are supported by the NIH, CDC, and Department of Transportation.

We’re encouraged by the rapidly growing bipartisan momentum to power progress for the periodic paralysis community!

Thank you to Dr. Tyler Nelson, Cienna Ditri, Holly Benson, Mark Dysinger, Paul Willis, Dr. Mark Rich, Monica Cramer, Tashia Tomlinson, Ralph Berthiaume, & James Romano for giving their time to this important cause.

03/26/2026

Real change for people with periodic paralysis requires action… and World Periodic Paralysis Day is officially powering that! Not someday, not tomorrow, now!

We are thrilled to share the very first World Periodic Paralysis Hill Day in Washington DC hosted by the Periodic Paralysis Association. This week board member, Leslie Wengler and President, Cienna Ditri came together to advocate on Capitol Hill to ensure the needs of this community are no longer overlooked. Together they asked that awareness, research, and advocacy for periodic paralysis are supported by the NIH, CDC, and Department of Transportation. They shared real life lived experiences that emphasize the change that is needed to give everyone in our community the quality of life they deserve throughout all areas of life. Change is coming… stay tuned!

03/23/2026

Breaking News!! 6 States have officially proclaimed March 23, 2026 as
World Periodic Paralysis Day:
Michigan
Oregon
South Carolina
Connecticut
Massachusetts
Nebraska

World Periodic Paralysis Day is by the periodic paralysis community, for the periodic paralysis community. It is our community of members, board members, and leaders coming together that truly make this day special. Thank you to new PPA board member Mark Dysinger for securing the Connecticut proclamation, PPSN Director Ralph Berthiaume for securing Massachusetts, PPA President Cienna Ditri for securing Michigan, advocacy power partner Tashia Tomlinson for securing South Carolina, and advocacy power partner Staci Armburst for securing Nebraska. Together we are truly uniting the global community to power progress for periodic paralysis! Congratulations and thank you to everyone for their hard work raising awareness and advocating this ⚡️🌃🐭

None of this would be possible without our lead sponsor making this day possible and to the , , , , , and for coming together to change the world for people living with periodic paralysis. If you are an organization that would like to get involved, you can email info@periodicparalysis.org

03/23/2026

Happy World Periodic Paralysis Day from Chicago! Did you know that Chicago was World Periodic Paralysis Day’s first Beacon of Hope? These beacons represent strength, unity, and illuminate hope for people all around the world living with this group of rare neuromuscular conditions.

Not only is Chicago home to the first beacon of hope, but it is also home to who through their programs like free genetic testing, patient access managers, patient mentors, and resources are able to create hope, strength, and unity every day for people living with periodic paralysis.

This year the Periodic Paralysis Association and united to celebrate the change they are partnering to create and to power up periodic paralysis together! The Periodic Paralysis Association is grateful to for being our lead sponsor and partner in creating World Periodic Paralysis Day.

How are you celebrating World Periodic Paralysis Day?

03/22/2026

1 day until World Periodic Parlaysis Day 2026! ✨⚡️🌃🐭 How are you celebrating?
An easy way to get involved is to show your zeal for teal! Wear your World Periodic Paralysis Day T-shirt or any teal/turquoise clothes and post a picture to social media! Remember to tag us and use , together we can power up periodic paralysis!

Looking for more ways to get involved? Check out 6 more ways you can get involved on the 2nd picture or visit www.worlperiodicparalysisday.com to share your story, become an ambassador, and celebrate with us!

None of this would be possible without our lead sponsor making this day possible and to the , , , , , and for coming together to change the world for people living with periodic paralysis. If you are an organization that would like to get involved, you can email info@periodicparalysis.org

03/21/2026

Action Alert: Do you live near Chicago, Philadelphia, San Diego, or Tampa? Gather your family and friends to see the 2026 World Periodic Paralysis Day Beacons of Hope lit up to raise awareness. Share pictures of the Beacons of Hope on social media to help power up periodic paralysis around the world!

-Chicago Skyline 3/20-3/23
-San Diego Convention Center 3/21
-Philadelphia: 3/21-3/23
* One Liberty Place
* Triad1828
* FirstService Residential
-Tampa: 3/23
* City of Tampa City Center
* Curtis Hixon Waterfront Park
* Old City Hall
* Tampa Riverwalk
* River Tower Park
* Tampa Bridges

A big thank you to our lead sponsor for making this day possible and to the , , , , , , and for coming together to change the world for people living with periodic paralysis. If you are an organization that would like to get involved, you can email info@periodicparalysis.org

03/20/2026

Extra! Extra! Read all about it! World Periodic Paralysis Day 2026 is making headlines! Over 266 syndications have shared about already including Yahoo! Finance, Associated Press, Pittsburgh Post-Gazette, Boston Herald, Houston News Today, The Sun Chronicle, The Chronicle Journal, Capitol Hill Times, Buffalo News, and many, many more!

Periodic Paralysis can be an invisible illness, but this year we are making it visible to the world! Together we can power up periodic paralysis! ⚡️🐭🌃
A big thank you to our lead sponsor for making this day possible and to the , , , , , and for coming together to change the world for people living with periodic paralysis. If you are an organization that would like to get involved, you can email info@periodicparalysis.org

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https://periodicparalysis.org/

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