News

The PPA has a new board member

We are pleased to announce the addition of Evelyn Black to the PPA Board in the newly formed position of Director of Growth Development. Evelyn has spent many years working with philanthropic groups such as Habitat for Humanity, and is tremendously committed to helping others. She is the Human Resources Manager for an Orlando, Florida

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Chicago Conference 2020 cancelled

Dear PPA Membership, Due to the Coronavirus and the effect it is having on the entire world the PPA Conference that was to be held in Chicago September 5-6 has been cancelled. We cannot proceed with plans for a conference we cannot guarantee due to the tremendous expense to your health and the expense that

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Internal mail problem solved

Due to changes in the settings at our hosting partner, the PPA was not able to send internal mail anymore. This has consequences for the ‘As the Experts’ functionality and the registration for the 2020 conference. The problems are solved yet.

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Dr. Jake Levitt steps down as President of the PPA

It is with a heavy heart that we must say goodbye to Dr. Jake Levitt as he steps down as President of the PPA after so many years. Jake has been a vital part of the organization in many ways: as a patient advocate, as a medical resource for our patients, and as a friend

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The registration for our Chicago PPA Conference 2020 is now open

Dear PPA Members, The registration for our Chicago PPA Conference 2020 is now open on the PPA website. We know many of you have made hotel reservations, but you MUST now register with the Periodic Paralysis Association, so we know how many people to expect. You can register your entire group at one time on

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Renewed site announcement

One of the most important things that we at the PPA can do is to continue working on ways to remain in contact with you in the best possible way. To that end, we are proud and happy to reveal our updated website!  You will immediately see our new look and discover the ease of

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PPA has a new Treasurer

As we all know, change is certain to happen, and the PPA Board is a recent example. After many years of extremely dedicated service to you, Shelley Shifman has stepped down as our esteemed Treasurer. She will now be free to spend time with her expanding family. Shelley has played a vital role in the

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2019 PPA Conference was a tremendous success!

We are happy to report that our Orlando 2019 PPA Conference was a tremendous success! Held at the Rosen Shingle Creek Resort, we had a record 120 attendees for the three-day event. Excellent presentations were given by the top names in periodic paralysis, including Drs.Jack Tarleton, Todd Bell, Stephen Lewis, Steve Cannon, William Catterall, Sub

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Strongbridge Dinner Event – Oct. 25th in Orlando, FL

Dear Member of the PPA, You are invited to attend an informational dinner program on Friday, October 25th at 6pm in Orlando, FL during the free evening of the PPA Conference. This program is sponsored by Strongbridge Biopharma® and will focus on the power and importance of advocacy, education, and support when living with Primary Periodic Paralysis (PPP).

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NORD webinar on self advocacy and care coordination

Our partners at Strongbridge Biopharma are sponsoring an upcoming NORD webinar on self advocacy and care coordination.  Here are the details. NORD’s RareEDU® webinars cover topics important to patients and caregivers. These webinars are free and intended for everyone to access. Do you want to learn how to better advocate for yourself in a healthcare

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