What would evolve into Periodic Paralysis International began mid-1995 with an email between Deb Cavel-Greant and one other patient with hypokalemic periodic paralysis. One by one, patients found Deb’s information page on hypokalemic periodic paralysis, which was part of her genealogy site.
By January 1997, 18 patients were exchanging emails about their experiences with periodic paralysis. However, this method of communication had become cumbersome, so the group decided to shift to a LISTSERV format. 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 LISTERV continued to grow and accumulate a wide variety of resources. In 2001 the decision was made to publish these resources and make them available to patients worldwide. This led to the creation of the website Periodic Paralysis International(PPI) under the domain; hkpp.org.
Many have worked behind the scenes over the years, including some of the most knowledgeable physicians and researchers in the fields of genetics and channelopathies. Especially remembered are those who devoted themselves to this community and lost far too soon, such as Don Anderson and Dr. Frank Lehmann-Horn.
In 2022 the Periodic Paralysis International nonprofit was moved to the United States, where a new Board of Directors has assumed management of the organization. The continued involvement of the Greant family, combined with the passion of the new board members to expand awareness and support for patients, promises an exciting future for the Periodic Paralysis community.
Periodic Paralysis International is dedicated to advocacy and research for the rare disease Primary Periodic Paralysis (all forms). To provide easy access to current medical research as well as empowering and connecting individuals and families around the world.