Periodic Paralysis Association

08/07/2026

📅 The Every Move Matters schedule has arrived!

Next weekend, our community comes together for Every Move Matters—a free, virtual summer camp created to connect people living with periodic paralysis and those who support them through creativity, friendship, and education.

Over three days, you’ll hear from athletes, artists, photographers, advocates, comedians, and community leaders who are redefining what it means to keep moving forward and make every move matter while living with periodic paralysis and rare disease.

✨ This year’s sessions include:
💙 Every Connection Counts
😂 Every Laugh Matters
🐴 Every Ride Matters
🎨 Art Panel
📸 Every Photo Matters
🏅 Every Movement Matters: Sports Panel

Whether you’re looking for practical advice, encouragement, new friendships, or simply the reminder that you’re not alone, there’s a place for you at Every Move Matters.

👉 Swipe through the schedule, save this post so you don’t miss your favorite sessions
📅 August 14–16
💻 Virtual & FREE
🔗 Register now at periodicparalysis.org/every-move-matters (link in bio)
What session are you most excited for? Tell us in the comments! 💚

08/03/2026

Announcing our Periodic Paralysis Conference 2026 Agenda*! ✨

Join us for a weekend of education, connection, and collaboration featuring sessions on:
⚡ Periodic Paralysis
⚡ Skeletal Muscle Channelopathies
⚡ Pain
⚡ Genetics
⚡ Mental Health
⚡ Diagnostic Approaches
⚡ Advocacy
⚡ Adapting Your Life
…and much more October 10-11 in Orlando, FL!

One of the most valuable parts of this conference is the opportunity to meet others who truly understand life with periodic paralysis. Connect face-to-face with patients, caregivers, researchers, physicians, advocates, and allied organizations. Build community, share experiences, and gain direct access to leading experts and researchers in the field.

We can’t wait to bring our community together in Orlando for another unforgettable conference experience. See you there!

Register for the conference at the link in our bio or at https://periodicparalysis.org/conference-2026/

*the agenda is subject to change


Conferen

08/02/2026

The Periodic Paralysis Association is proud to partner with the Muscular Dystrophy Association for this educational program. 💙💛

Join us for an informative virtual event!
🗓 Tuesday, August 4, 2026
🕓 4:00–5:00 PM ET

Don’t miss MDA’s Spotlight On: Periodic Paralysis featuring Dr. Steven Cannon of the David Geffen School of Medicine at UCLA.

Learn about:
✅ The underlying mechanisms and common symptoms of Periodic Paralysis
✅ Current approaches to diagnosis and clinical evaluation
✅ Personalized treatment strategies
✅ Emerging therapies and the latest research
✅ Practical tips and resources for living well with Periodic Paralysis
✅ A live Q&A with Dr. Cannon

➡️ Register FREE today: https://www.mda.org/care/community-ed/mda-virtual-learning/2026/spotlight-on-periodic-paralysis

Special thanks to our program supporter: Xeris Pharmaceuticals

07/28/2026

The Periodic Paralysis Association is proud to partner with the Muscular Dystrophy Association for this educational program. 💙💛

Join us for an informative virtual event!
🗓 Tuesday, August 4, 2026
🕓 4:00–5:00 PM ET

Don't miss MDA's Spotlight On: Periodic Paralysis featuring Dr. Steven Cannon of the David Geffen School of Medicine at UCLA.

Learn about:
✅ The underlying mechanisms and common symptoms of Periodic Paralysis
✅ Current approaches to diagnosis and clinical evaluation
✅ Personalized treatment strategies
✅ Emerging therapies and the latest research
✅ Practical tips and resources for living well with Periodic Paralysis
✅ A live Q&A with Dr. Cannon

➡️ Register FREE today: https://www.mda.org/care/community-ed/mda-virtual-learning/2026/spotlight-on-periodic-paralysis

Special thanks to our program supporter: Xeris Pharmaceuticals

Join us for an informative virtual event!
🗓 Tuesday, August 4, 2026
🕓 4:00–5:00 PM ET

Don't miss MDA's Spotlight On: Periodic Paralysis featuring Dr. Steven Cannon of the David Geffen School of Medicine at UCLA.

Learn about:
✅ The underlying mechanisms and common symptoms of Periodic Paralysis
✅ Current approaches to diagnosis and clinical evaluation
✅ Personalized treatment strategies
✅ Emerging therapies and the latest research
✅ Practical tips and resources for living well with Periodic Paralysis
✅ A live Q&A with Dr. Cannon

We're proud to partner with the Periodic Paralysis Association for this educational program.

➡️ Register FREE today: https://www.mda.org/care/community-ed/mda-virtual-learning/2026/spotlight-on-periodic-paralysis

Special thanks to our program supporter: Xeris Pharmaceuticals

07/28/2026

Meet Dr. Erin Conboy, Associate Professor of Clinical Medical & Molecular Genetics and Pediatrics at Indiana University School of Medicine and Director of the Undiagnosed Rare Disease Clinic. Dr. Conboy is a nationally recognized clinical geneticist dedicated to helping patients and families finally receive answers after years of searching for a diagnosis.

Dr. Conboy will present:
From Symptoms to Answers: How the Undiagnosed Rare Disease Clinic Uncovered the Genetic Cause of a Family’s Periodic Paralysis.
For many individuals living with rare diseases, the search for a diagnosis can take years or even decades. In this session, Dr. Conboy will take attendees behind the scenes of the Undiagnosed Rare Disease Clinic and share how advanced genetic testing helped identify a previously undiscovered genetic variant for hypokalemic periodic paralysis, providing long-awaited answers for a family.

Attendees will learn about the important role genetic testing plays in diagnosing periodic paralysis, the different types of genetic testing available, when each may be appropriate, and how advances in genomic medicine are helping uncover new disease-causing genes. Dr. Conboy will demonstrate how persistence, collaboration, and cutting-edge technology are transforming the future of rare disease diagnosis and opening new doors for research and treatment.

Dr. Conboy founded the Undiagnosed Rare Disease Clinic at Indiana University School of Medicine in 2020. Her work combines clinical genetics, advanced genomic technologies, and collaborative research to identify previously unsolved rare diseases and improve care for families around the world.
This is a session you will not want to miss!

Whether you’re newly diagnosed, still searching for answers, or interested in the latest genetic discoveries in periodic paralysis, this presentation will provide valuable insight into how genetics is shaping the future of diagnosis, research, and personalized care.

📅 October 10–11, 2026
📍 Hilton Orlando Lake Buena Vista – Disney Springs Area
Register today at PeriodicParalysis.org/conference-2026

07/22/2026

Be part of the conversation shaping the future of periodic paralysis research.

The Periodic Paralysis Conference 2026 Poster Session is now accepting abstract submissions! We invite researchers, clinicians, geneticists, students, trainees, and healthcare professionals to share their work with an international audience dedicated to advancing the understanding and care of periodic paralysis and related skeletal muscle channelopathies.
Whether you’re presenting basic science, clinical research, genetics, pain, diagnostics, patient care, or rehabilitation this is an opportunity to showcase your work, connect with leaders in the field, and contribute to meaningful progress for the rare disease community.
📍 Periodic Paralysis Conference 2026
🗓 October 10–11, 2026
📍 Hilton Orlando Lake Buena Vista – Disney Springs® Area
📄 Abstract Submission Deadline: October 1, 2026
Learn more about submission guidelines and submit your abstract here: https://periodicparalysis.org/conference-2026/2026-pp-conference-call-for-abstracts/

Together, we’re moving research forward—one discovery at a time.

07/21/2026

Meet Ross Knoll, PhD, a licensed clinical psychologist specializing in integrated behavioral health and evidence-based interventions that help people navigate the emotional challenges of living with chronic illness. Dr. Knoll completed his PhD in Clinical Psychology at Northern Illinois University, followed by a postdoctoral residency in Clinical Health Psychology. His work focuses on helping patients build practical skills that improve long-term health and well-being.

At Periodic Paralysis Conference 2026, Dr. Knoll will present: Moving Forward with PP: Strategies from Problem-Solving Therapy

Living with periodic paralysis means managing much more than physical symptoms. Individuals with chronic medical conditions are at higher risk of developing mental and behavioral health conditions, including depression, anxiety, and insomnia. People with rare medical diseases are at even greater risk, with nearly half developing a depressive or anxiety disorder in their lifetime.

This interactive session will place a spotlight on interventions from Problem-Solving Therapy (PST), a brief evidence-based treatment that provides people with tools to identify and solve the problems that arise from life’s stressors, with particular consideration for the unique challenges experienced by people with primary periodic paralysis.

Attendees will learn practical strategies to identify and define problems, generate potential solutions, and implement action plans to address those problems.

Whether you’re navigating healthcare, work, relationships, or the unpredictable nature of periodic paralysis, this session will provide actionable tools to help you move forward with greater resilience and confidence.

This is a session you won’t want to miss!

Join us in person to meet Dr. Knoll, ask him your questions, and learn practical, evidence-based strategies that support not only your physical health, but your mental health, too.
📅 October 10–11, 2026
📍 Hilton Orlando Lake Buena Vista – Disney Springs Area
Register today at:
PeriodicParalysis.org/conference-2026

07/20/2026

Advocacy Alert: We need you! The Periodic Paralysis Association is working to have periodic paralysis recognized in the Senate
appropriations report accompanying
NIH funding for the first time, helping elevate research into our disease as a national priority.

We’re looking for volunteers in key states to help us advocate for periodic paralysis (virtually) on Capitol Hill.

Do you live in: West Virginia, Wisconsin, Kansas, Louisiana, Mississippi, Arkansas, Alabama, South Dakota, Ohio, Washington, Illinois, Rhode Island, New Hampshire, Oregon, Hawaii, or Connecticut?

Email [email protected] to get involved!

07/17/2026

How can you participate in Every Move Matters?

Buy and wear exclusive Every Move Matters Camp Gear to celebrate with us August 14-16, and keep wearing it all year long! Wearing your gear ANYWHERE you go creates vital visibility for periodic paralysis.

1)swipe through today’s post for some style inspiration

2)purchase the exclusive Every Move Matters T-shirt here: https://www.customink.com/fundraising/every-move-matters-shirt?utm_campaign=desktop-post-launch-v3&utm_content=every-move-matters-shirt&utm_medium=social&utm_source=copy-link

3)purchase the exclusive Every Move Matters Hat here:
https://www.customink.com/fundraising/every-move-matters-hat?utm_campaign=desktop-post-launch-v3&utm_content=every-move-matters-hat&utm_medium=social&utm_source=copy-link

07/14/2026

Meet Dr. Mark M. Rich, MD, PhD, Professor of Neuroscience Cell Biology & Physiology at Wright State University.

For decades, Dr. Rich has dedicated his career to understanding the dysregulation of muscle excitability in genetic muscle disorders. His research has advanced our understanding of the mechanisms behind periodic paralysis and helped pave the way toward new therapeutic approaches. More recently, his laboratory has uncovered new insights into muscle stiffness in hyperkalemic periodic paralysis that may lead to improved treatments for patients.

At Periodic Paralysis Conference 2026, Dr. Rich will present:
Muscle Tightness and Weakness in Hyperkalemic Periodic Paralysis

Many people living with hyperkalemic periodic paralysis experience muscle tightness and stiffness, but why do these symptoms occur, and how are they connected? In this session, Dr. Rich will explore the science behind these hallmark features of hyperkalemic periodic paralysis, discuss what researchers have learned about the underlying muscle abnormalities, and highlight how these discoveries are shaping future treatment strategies.
With more than 25 years of experience as both a neurologist and scientist, Dr. Rich has devoted his career to translating laboratory discoveries into treatments that can improve the lives of people with neuromuscular disease. His work continues to push the field of periodic paralysis research forward.
This is a session you won’t want to miss!

Join us in person to learn from one of the foremost experts studying hyperkalemic periodic paralysis and discover how today’s research is helping shape tomorrow’s treatments.

📅 October 10–11, 2026
📍 Hilton Orlando Lake Buena Vista – Disney Springs Area
Register today at PeriodicParalysis.org/conference-2026