Periodic Paralysis International began in mid-1995 with an e-mail between Deb Cavel-Greant and one other patient with hypokalemic periodic paralysis. One by one patients found Deb's page on HypoKPP, which was part of her genealogy site.
By January 1997 a total of 17 patients were exchanging daily e-mail, and the decision was made to move to a Listserv format. Deb Greant and Don Anderson approached St. John's University in Manhattan to host the new list and the HKPP Listserv officially began operating in March 1997.
The Periodic Paralysis International website has been a source of reliable information since its inception, and the HKPP Listserv has provided a safe environment for patients, family members and caregivers to exchange experiences, share knowledge and to support and encourage each other.
We are an HonCode Certified site, and have been since May of 2001. We are a global family. Our members are primarily from the USA, Britain and Canada, but we have members on every continent, and from countries and cultures as diverse as Andorra, Columbia, Pakistan and Malawi. While we estimate we've had about 2000 subscribed members over the years, some of these members have represented large affected families. We've also had numerous physicians as List members, some of whom have been quite active participants.
Our members have participated in research, have helped expand what is known about the ion channelopathies, and have forged relationships with some of the finest physicians in the world. But we still have a long way to go. Too many physicians still know too little (or nothing) about the periodic paralyses, and patients are too often labeled "somatizers" rather than diagnosed.
And so our history speaks to our goal, educate, educate, educate - patients, families and physicians.