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 âcomfort zoneâ, 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 rÂ Â Â 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 PPAâs 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!
August 17 - Friday
- 13:00 Open Registration for pre-registered guests
- 13:45 Open with Welcome from Dr. Levitt
- 14:00 Gabriel Low Video
- 14:15 Gabriel Low
- 14:30 Dr. Weber
- 15:00 Break
- 15:15 Questions Dr. Weber
- 15:45 Open Mic with Dr. Michael Segal
- 16:45 Dr. Michael Segal to talk to selected patients about Lidocaine sensitivity
- 18:00 Conference ends for day and doors are locked
- 8:00 Registration
- 8:45 Short Welcome from Dr. Levitt and Board Introductions
- 9:00 Dr. Steve Cannon
- 9:45 Questions Dr. Cannon
- 10:00 Break
- 10:15 Dr. Annabelle Baughan
- 10:45 Questions Dr. Baughan
- 11:15 Dr. Michael Segal – New Project with genes
- 12:00 Start lunch break sending people to buffet
- 14:00 Doctor Round Table
- 15:00 Break
- 15:15 Round Table continues with mock medical exam of 2 people from audience
- 16:45 Conference ends for day
- 9:00 Memorialize Dr. Lehmann-Horn with video and words from Dr. Levitt
- 9:30 Dr. Bas Stunnenberg
- 10:15 E s t h e r M e r k u s (student) Dr. Bas Stunnenberg
- 11:00 Questions for Dr. Stunnenberg and E s t h e r M e r k u s
- 11:30 Good bye from the PPA
- 12:30 Doors are locked