Live informational event on Primary Periodic Paralysis

Dear Member of the Periodic Paralysis Association

Mark your calendar! You are invited to attend a FREE live (in-person) informational event on Primary Periodic Paralysis (PPP) sponsored by Strongbridge Biopharma®. This event will feature a Patient Ambassador, Janine G., sharing her journey, as well as insights from a neuromuscular expert who specializes in diagnosis and management of PPP, Dr. Jeffrey Rosenfeld, Professor & Associate Chairman of Neurology at Loma Linda University School of Medicine. We hope that this event will be an opportunity for you to meet other people with Primary Periodic Paralysis and find out that you are not alone as you seek advice and information.

Dinner will be served. All dietary needs will be mindfully accommodated. If there is something particular that would make this event easier for you to attend, please let Strongbridge know during registration.

To register for this event please call 

(888) 203-7430

Thursday, May 2nd , 6:30 PM MT/PT

Maggiano’s Little Italy

The Promenade, 16405 N Scottsdale Rd, Scottsdale, AZ 85254-1578
(480) 333-4100

DIETARY NEEDS & RESTRICTIONS WILL BE ACCOMMODATED

 

Intended for adults 18 and older

Intended for U.S. citizens and U.S residents (for 6 or more months only)

PERIODIC PARALYSIS ASSOCIATION CONFERENCE 2019

October 25-27

Rosen Shingle Creek Hotel

9939 Universal Blvd, Orlando, FL 32819

 

We are pleased to announce our 2019 PPA Conference to our membership. This is a 3 – day conference and is open to all PPA members, their families, and physicians. There is NO conference fee for the conference and all attendees are invited to join us for dinner on Saturday evening in the Conway Room of the hotel at our expense.  This will be a wonderful time to renew old friendships and forge new ones! Please see the agenda for the conference which includes all speakers, times of presentations, and dinner. This is not a formal dinner, please be comfortable!

Hotel reservations are your responsibility and you can access our special room rate.

As usual we are welcoming an esteemed panel of speakers who will interact with you and answer questions of all kinds. This is an extremely diversified group of speakers and we welcome all of them to the PPA family.

There will be onsite Paramedic coverage during all conference hours. We always encourage people to bring a friend or family member with you that could accompany you to the hospital if the need should arise and be your advocate. PPA leadership and attending physicians cannot treat you medically in an emergency situation nor will they accompany you to the hospital.

We keep the conference room at a constant 75 degrees. If you get cold or warm, please bring the appropriate attire. It is also important to bring any mobility devices or other equipment with you as our sources are limited. Water will be available at all times, don’t forget to bring your personal medications!

The meeting room has floor to ceiling windows and is on the first floor of the hotel with access to an outdoor patio. You may move about as you wish during the entire conference. Handicap bathrooms are located just outside the meeting room.

If you have questions, large or small please do not hesitate to contact Linda Feld

You MUST register for the conference on our site. If you do not register you will not be admitted. We need a head count of ALL attendees. The registration form which will come up next is where you register. Please make sure your email is valid as you will receive a notice of your registration.

On the registration form the person whose name is used to register is #1 in the party. Additional lines are provided for OTHER family members or guests. Do not count yourself two times.

We look forward to seeing you in October for the biggest and best conference ever!!

The Frank Lehmann-Horn Library

Dr. Frank Lehmann-Horn (June 22, 1948 – May 5, 2018) was the leader in so many facets of understanding and treating the periodic paralyses, as well as being especially caring for the daily stresses endured by the patients themselves.  With his passing earlier this year, the Periodic Paralysis Association wanted to create a living tribute to everything he accomplished, including the foundations he laid for others in the fight for cures.

We are honored to include on our website every locatable document that he either wrote or co-wrote on the subject of Periodic Paralysis.  In so doing, we want to humbly thank his wife, Christa, for giving us access to these documents.  We at the PPA will continue to remember this great man fondly and are proud to establish the Lehmann-Horn Library in his honor.

Visit the library here

 

We are delighted to report on the success of the PPA Conference held at the Hilton Dublin Airport Hotel and Conference Center from August 17th through 19th! Over ninety people attended, from places such as Botswana, China, Europe, and the US.

The conference was special for many reasons:

  • Firstly, because this was the first time the PPA has conducted a conference outside of the United States. We were somewhat nervous about undertaking the risk of going outside our “comfort zone”, but we realized that challenge is similar to what people with periodic paralysis do every day in dealing with people who have no understanding of the issues. Additionally, we feel it is important to try reaching as many people as possible.
  • We were lucky to have seventeen year-old Gabe Low in attendance! What an amazing, strong-willed, and positive person he is. He has HKPP, and he has made it his mission to elevate awareness about rare diseases. In July, he rode his bicycle from Seattle, Washington to Cleveland, Ohio (3000 mi, 4800km). Then, in early August he placed high in the USA Triathlon National Competition, which qualifies him to compete in the World Championship next year in Switzerland. He gave an inspiring talk about what it was like growing up with the disease, and he even autographed some souvenir hats that were auctioned at the conference to benefit the cause. After the conference ended, Gabe had planned to ride his bike around Ireland. What a special young man!
  • The other speakers were also engaging, as they discussed their fields of expertise with the group. Jake Levitt, Frank Weber, Michael Segal, Steve Cannon, Annabelle Baughan, Bas Stunnenberg and E s t h e r M e r k u s were not hesitant about answering questions, which provides one of our conference highlights. It provides the foundation for interaction among all who attend, which also reveals common ground and can start new friendships. At this conference, we had a number of people who suffer from each of the periodic paralyses: hypo, hyper, normo, and ATS.
  • On Sunday morning Linda Feld, the PPA’s Vice President, gave a wonderful Memorial message about the late Doctor Frank Lehmann-Horn, who tirelessly laid the groundwork for so much of what we now know about periodic paralysis. Dr. Steve Cannon also added an insightful talk about his own relationship with Dr. Lehmann-Horn.

The Conference was a huge success due to the energies of many people, and the PPA Board is already discussing other sites for upcoming events. Stay tuned!

To view the conference videos, lectures or photos go to this page

Gabriel Low, triathlete

Dear Fellow PPA Member,

It is with the greatest excitement that we share an incredible story with you!

Gabriel Low is a 17-year-old competitive triathlete, but not a typical one.  A triathlon combines swimming, bicycling and running in rapid succession, and is not easy for anyone.  He is currently in training for the USA Triathlon Nationals being held this August, with hopes of qualifying him for the World Championships being conducted in Switzerland next year.   So, why is he an untypical world class athlete?  Because he has had HKPP since he was six years old.  Through a regimen of numerous medications and having a low salt, low sugar diet, he has been able to live a near-normal life, yet he still suffers from attacks.

Although never afraid to share the fact that he has periodic paralysis, his mission before the August race is to take a stronger stance as someone with a rare disease.  How would you take such a position?  Maybe organize a pp group meeting?  Reach out to communicate to others with periodic paralysis?  Both would be excellent choices, but Gabe is going much further, literally.  You see, he is bicycling all the way from Seattle, Washington to Cleveland, Ohio (almost 3000 mi or 4828 km)!  He leaves Seattle on Monday, June 11 and is scheduled to arrive in Cleveland on August 6 or 7.  He will ride 60 to 70 miles per day and take about 17 days of rest throughout the trip.  On some of those days, he will be speaking to different groups about rare diseases, obviously to include periodic paralysis.  Thanks to our gracious and committed friends at Strongbridge Biopharma, Gabe will not have to be concerned about having a place to stay on any of the overnights, since they are sponsoring him.  They are also supplying him screen printed cycling shirts which also sport the PPA logo.  Additionally, he will have a van accompanying him to provide any bike parts that need repairing or replacing along the way.

The following link will take you to his planned route, and we will keep you posted on his progress.

This story gets even better because Gabe will be a featured interactive speaker at the PPA Conference held at the Dublin Airport Hilton on August 17 through 19 of this year!  There is still time for you to register for it at www.periodicparalysis.org.  We hope to see you there!

Gabe’s positive energy is not simply physical (although that, in itself, is amazing), but from spiritual and emotional perspectives as well.  Raising awareness for periodic paralysis and offering guidance are at the core of the PPA mission statement, and whatever anyone can do to fuel those pursuits puts the community that much closer to cures.   Use the Periodic Paralysis Association website to follow Gabe’s progress!

Go Gabe!

All the best from your friends on the PPA Board,

Dr. Jacob Levitt
Linda Feld
Shelley Shifman
Jeff Albertson
Eric Sanderse

Privacy Policy

The PPA embraces the new California and European Privacy Policy and has created a new policy for the PPA Website.  In this policy, we make it clear how your privacy is protected.  Please read the full text here.

Frank Lehmann-Horn: June 22, 1948 – May 8, 2018

Dear Periodic Paralysis Community,

It is with deepest sorrow that we learned of the passing of Dr. Frank Lehmann-Horn. Frank had struggled with a series of cancers for the past few years, forcing him to give up his lab. He has done so much for periodic paralysis and patients. He pioneered genetic testing, offering it for free to many of us, and discovering mutations in many of us thereby validating our diagnosis and allowing us to optimize our therapy. He coached many of us in our treatments. He pioneered diagnostic methods, like sodium MRI and new treatments, like eplerenone. He published prolifically, literally writing the textbook chapters on periodic paralysis and related disorders. He mentored generations of researchers and clinicians. Most important, he was loving and kind, a fervent supporter of the Periodic Paralysis Association and of the patients suffering with these diseases. He will never be replaced, never be forgotten, and always be missed.

The most meaningful award Frank received in his lifetime was the Art of Listening Award. He valued that night more than all his professional awards because it was from his patients whom he loved. You can click on the link here to see the ceremony.

With Deep Sadness,

The PPA Board

Primary Periodic Paralysis: A Physician’s Personal Experience as a Patient

Primary periodic paralysis (PP) is a group of autosomal dominant channelopathies that cause episodes of paralysis or muscle weakness that have many triggers including medication, exercise, certain foods, or stress. There is wide variation in the age of symptom onset, ranging from just after birth to late adulthood, although patients typically begin to experience attacks before age 20 years. PP affects individuals of both sexes and all races.1

The types of PP are defined by shifts in blood potassium levels during acute episodes: hypokalemic PP, the most common form of PP, involves a downward shift in serum potassium levels, whereas hyperkalemic PP is characterized by an upward shift. However, in many patients, the blood potassium levels do not fall outside the normal laboratory reference range. In Andersen-Tawil syndrome (ATS), potassium levels are inconsistent during attacks.2

“Diagnosis of PP requires a history of transient episodes of weakness, determination of ictal and steady-state serum potassium levels, [electromyogram,] and exclusion of secondary causes,” according to authors of a paper published in Brain.2 However, doctors often attribute the symptoms to other diseases or to psychological distress, and patients may not receive a diagnosis until many years after onset.

That was certainly the case for Annabelle Baughan, a retired hematologist-oncologist in France who ultimately had to investigate and determine her own diagnosis. She spoke in depth with Neurology Advisor about her disease history and frustrating encounters in the healthcare system in pursuit of a diagnosis and appropriate treatment, as well as her current status, with important advice for physicians who may encounter patients with PP.

The first part of Dr Baughan’s story is below, ending just after she was finally diagnosed. Upcoming installments will also include input from Deborah Cavel-Gréant, president of Periodic Paralysis International.

read more…