Dear PPA Membership,
The Periodic Paralysis Association has the opportunity to participate in an investigational panel discussion surrounding the use of Keveyis. You DO NOT have to be a patient using Keveyis to participate.
For this panel we need to identify 4 people who are willing to speak in front of a small audience and who have an adequate knowledge about their disease process and are willing to share their personal story. This is not something that will be used in any public way.
- 1 patient with Hypo PP
- 1 patient with Hyper PP
- 1 patient with ATS
- 1 patient with Paramyotonia Congenita
All travel expenses will be paid for you to travel to a location within the USA and at this time I can only ask for volunteers within the USA. Anyone going should be in stable condition regarding their health just to make travel easier. There will not be any testing of the participants, it will only be a seated panel discussion.
This panel will take place sometime in January, but a specific date has not been decided. I believe it will take place in a warmer southern state but not Florida.
If you are interested, please email Linda Feld at email@example.com and include your contact information and your location. I will be calling all people who have an interest in participating but at this time we can only have 4 people on the panel. If you need to travel with a companion, please let me know.
Thank you for your support as always!
Linda Feld PPA Vice President