Periodic Paralysis International

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Dedicated to advocacy of the rare disease Primary Periodic Paralysis, providing easy access to current medical research, as well as empowering and connecting affected individuals and families around the world.

A letter from the President of Periodic Paralysis International: Dear Friend of the Periodic Paralysis Community,Periodi...
12/17/2025

A letter from the President of Periodic Paralysis International:

Dear Friend of the Periodic Paralysis Community,

Periodic paralysis is a rare neuromuscular disease where affected patients become variably weak, and often completely paralyzed, in response to various triggers, including food, stress, temperature, and even lights. Attacks can last for hours to days and leave many wheelchair bound in their later years. Research into the causes of periodic paralysis have identified genetic mutations in muscle ion channels as the root cause, but therapies have been lagging. Current therapy can prevent attacks some of the time and resolve an acute attack of paralysis but with considerable difficulty. This leaves the patient vulnerable and can have fatal consequences.

Dr. Steven Cannon and his research team are pioneering various exciting strategies that show promise to make it to the clinic in the coming years. His work is our best hope at finding a cure, or at least, to manage this disease more safely and effectively. His major areas of focus in the current era is CRISPER gene editing that would promise to correct the mutation and erase the disease altogether, designer peptides to interfere selectively with the mutated ion channels allowing for normal muscle function and using genetic mouse models of periodic paralysis to screen existing agents that may hold promise for better safety and efficacy.

His lab cannot pursue all these avenues with the existing funding. Due to NIH cutbacks, some promising projects may have to be put on hold. We cannot let this happen. An investment in Dr. Cannon’s lab is an investment in yourself. If you or your loved ones have periodic paralysis, this is the most important charitable contribution you can make. The time to act is now.

Join us as we unite in this effort with the PPA and PPSN. All contributions are tax-deductible, and 100% will directly support Dr. Cannon’s lab.

Sincerely,

Jacob Levitt, MD
President, PPI

Donation link: https://www.zeffy.com/en-US/donation-form/dr-cannons-research-in-periodic-paralysis

03/21/2025

Power up Chicago! This weekend to celebrate World Periodic Paralysis Day (March 23rd), has listed WPPD as an event to illuminate the city skyline for on March 21st, 22nd, and 23rd! Select buildings in the Chicago skyline will be illuminating for the inaugural World Periodic Paralysis Day! Get your family, friends and come see these beacons of hope lit up to raise awareness. A big thank you to Chicago for becoming a beacon of hope to raise awareness for people living with periodic paralysis.

Image description: the Chicago skyline

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 [email protected]

Join Dr. Jacob Levitt, President of Periodic Paralysis International, for an insightful discussion on the diagnosis and ...
02/15/2025

Join Dr. Jacob Levitt, President of Periodic Paralysis International, for an insightful discussion on the diagnosis and latest treatments for Periodic Paralysis. Following his presentation, attendees will have the chance to engage directly with Dr. Levitt in a Q&A session. Don’t miss this opportunity to gain valuable knowledge and get your questions answered!

If you prefer not to speak during the open Q & A session but would still like to get an answer to a question, you are welcome to submit it ahead of time. Please submit any questions to: [email protected]

Join us Thursday, February 27th at 8pm EST via Zoom at:
https://zoom.us/webinar/register/WN_zit292q1RZmGDBKyHiNelA

*** Pre-registration is required ***

01/24/2025

Admin Announcement-

The PPSN would like to extend its congratulations to Dr. Jacob Levitt on his recent appointment as President of Periodic Paralysis International (PPI).
Dr. Levitt is highly regarded for his expertise, and tireless advocacy within the Periodic Paralysis community.
His medical training is not in neurology, but rather dermatology. Dr Levitt serves as a Clinical Professor in the Department of Dermatology at The Mount Sinai Medical Center in New York, NY. He also maintains a private practice with The Dermatology Specialists in New York City.
His expertise in Periodic Paralysis is rooted in his personal experiences living with Hypokalemic Periodic Paralysis, as well as that of family members, complemented by his medical training and research.

Dr. Levitt previously served as president and medical director of the Periodic Paralysis Association (PPA), a role he held from 2008 to 2020.

Jake's expertise in the PP community is widely recognized, and he has utilized various platforms, including interviews and scholarly articles, to share his knowledge on Periodic Paralysis. A video capturing his real-time experience during a paralysis episode has been viewed over 187K times, effectively promoting awareness about the condition.

As director of the PPSN and former president of the PPI, I look forward to collaborating with Dr. Levitt and the PPI on future initiatives in educating and supporting the Periodic Paralysis community and raising awareness about Periodic Paralysis.

Some of the scholarly articles and interviews on Periodic Paralysis by Dr Levitt ⬇️

video of a hypokalemic periodic paralysis attack- https://youtu.be/tbP9VhaREO0?feature=shared

Living With Periodic Paralysis: An Interview With Jacob Levitt, MD- https://www.neurologyadvisor.com/features/living-with-periodic-paralysis-an-interview-with-jacob-levitt-md/

Insider Tips on Periodic Paralysis: Issues in Developing a Comprehensive Treatment Plan-
https://www.neurologylive.com/view/insider-tips-periodic-paralysis-issues-developing-comprehensive-treatment-plan

Practical aspects in the management of hypokalemic periodic paralysis- https://pmc.ncbi.nlm.nih.gov/articles/PMC2374768/

Hypokalemic periodic paralysis: an owner’s manual- https://simulconsult.com/resources/hypopp/

Characterization of hyperkalemic periodic paralysis: a survey of genetically diagnosed individuals- https://link.springer.com/article/10.1007/s00415-013-7025-9

Periodic Paralysis International(PPI) Board of Directors Bio’s- https://hkpp.org/board-members-and-ambassadors/

PPI Website- https://hkpp.org

I strongly recommend that everyone register with the PPI to receive updates on events and information from their organization.- https://hkpp.org/be-a-part-of-the-action/

💖 Giving Tuesday:  A Personal Message from Linda Feld 💖This year, as I reflect on 30 incredible years with the Periodic ...
11/29/2024

💖 Giving Tuesday: A Personal Message from Linda Feld 💖

This year, as I reflect on 30 incredible years with the Periodic Paralysis community, I'm reminded of the deep joy that comes from giving - whether it's our time, our thoughts, or our support for one another. As Mahatma Gandhi said, "To find yourself, lose yourself in the service of others."

The countless stories, struggles, triumphs, and moments of connection I've shared with all of you have enriched my life in ways I never imagined. Though I will be retiring from my leadership role at the end of 2024 to focus on personal matters, my heart remains with this amazing community.

As a way to commemorate this milestone, I ask that you consider making a donation or volunteering your time to continue the mission of Periodic Paralysis International. This cause and all of you have been my family, and I hope we can continue to support one another for many years to come.

With love and gratitude,
Linda Feld

Click here to donate: https://hkpp.org/donate-with-zeffy/

GIVING TUESDAY, DECEMBER 3, 2024


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