There were about 175 people in attendance, including a panel of nine doctors and an equally intelligent group from Strongbridge Biopharma, which is marketing Keyveyis (dichlorphenamide), the only FDA-approved medication labeled for periodic paralysis.
An open microphone session on Friday jump started the Conference by inviting the attendees to share their personal stories, diagnostic journeys, and treatment successes with periodic paralysis. Over the weekend, the specialists presented content on: mutations of the sodium channels, physiological consequences of having a mutation, historical perspective about the field of channelopathies, observations about some similarities between hypermobility patients and periodic paralysis patients, information on how local pharmacists can be of assistance to those with periodic paralysis, and how stem cell research might benefit periodic paralysis.
One of the many themes that the conference reinforced is that patients are not alone in their disease. Oftentimes, doctors are not aware of how various (and strange) its symptoms can be and therefore can dismiss them as being psychosomatic. Doctors learn to attribute the most common disease to a presenting symptom. So, if a person presents with a fever they might suspect the flu before Ebola virus. But, you are out of luck if you ended up having Ebola virus (in more ways than one!). But, for most of the population, that rule actually works. Hence the saying by doctors that “if you hear hoof beats in Central Park (New York), think of horses and not zebras”. Unfortunately for periodic paralysis patients, we are the “zebras”, the rare entity that doctors often overlook for more common things. The PPA has adopted the zebra as its mascot because people need to look closer to realize it is not a horse. Another critically important benefit of the conference was that it gave the participants a chance to talk and share information with one another. In fact, at the end of the conference, many signed up to an email list whereby they could continue communicating with their new-found friends.
There were several lighter moments, especially when the Association Board hosted a silent auction. While wearing zebra ears and tail, President Dr. Jake Levitt played a hilarious auctioneer while inciting bids on several pieces of very attractive artwork, jewelry, as well as many zebra-related novelties. The auction was an enjoyable break in what turned out to be a hugely successful conference! We hope to see you in Dublin next August for our first conference abroad.
The agendaFriday Oct. 13
- 12:00 pm Board Meeting
- 1:00 pm Registration Opens at Hotel
- 2:00 pm Welcome to the PPA Conference and Introduction of Board and other people working with board any recognition of donors?
- 2:30 pm Introduction of Mickey Segal and explanation of him being mentor for Open Mic
- 3:00 pm BREAK
- 3:15 pm Continuation of Open Mic
- 4:30 pm Close of Conference for Day guests may stay and chat
- 6:00 pm Doctor/Board Dinner Location to be announced
- 8:15 am Registration Opens
- 8:45 am Welcome to Conference Day 2 (for people who did not attend previous day quick introductions)
- 9:00 am Dr. Weber Keynote Presentation Dr Weber :: PresentationDr Weber :: Lecture
- 9:45 am Questions for Dr. Weber
- 10:00 am BREAK
- 10:15 am Dr. Cannon Dr Cannon :: Presentation
and Dr Cannon :: Lecture
- 11:00 am Questions for Dr. Cannon
- 11:30am Break for Room set-up for lunch
- 12:15pm Buffet Lunch and Silent/Live Auction
- 1:45 pm Dr. Ptacek Dr. Ptacek :: Presentation and Dr Ptacek :: Lecture
- 2:15 pm Questions for Dr. Ptacek
- 2:45 pm BREAK
- 3 pm Dr. Bell Dr Bell :: Presentation and Dr Bell :: Lecture
- 3:30 pm Questions Dr. Bell
- 4:00 pm Dr Samantha Shifman Dr Shifman :: Presentation and Dr Shifman :: Lecture
- 4:30 pm Questions Dr Shifman
- 5:00 pm Conference Ends
- 9:00 am Dr Malan
- 9:45 am Questions for Dr Malan Dr Malan :: Lecture
- 10:00 am BREAK
- 10:15am Doctors on the Round Table
- 11:30 am Closing Remarks
- 12:00 pm Conference Ends
- 1:00 pm Doors are Locked