Post-Polio Health International

Post-Polio Health International (PHI), is a relatively new name for a non-profit organization that officially began its work in 1960. For many years it was known in medical, rehabilitation, and disability circles variously as GINI, or the International Polio Network, or the Rehabilitation Gazette Network, or more familiarly as Gini’s Network, in honor of Gini Laurie, its founder and driving force until her death in 1989.

PHI’s mission is to enhance the lives, health, and independence of polio survivors, as well as those in the cross-disability category of home ventilator users, who are addressed through a subsidiary organization called the International Ventilator Users Network (IVUN). PHI’s headquarters are in St. Louis, Missouri, where it has a small paid staff. Otherwise, it is run by volunteers, including a board of directors and various advisory committees. Financial support comes from donors, sponsors, member/subscribers, and also from a group of “association members” consisting of local and regional polio support groups.

PHI publishes two quarterly newsletters, Post-Polio Health and Ventilator-Assisted Living. It runs a telephone and e-mail answer-line during business hours, responding to requests from polio survivors, clinicians, researchers, and journalists. Its websites are updated almost every business day, and have a searchable archive of information on polio, post-polio syndrome, and independent living. It has recently begun to fund a modest amount of scientific research related to its mission – usually pilot studies, and occasionally to manage research projects for other organizations such as the Christopher and Dana Reeve Foundation. Increasingly, it is addressing the need to organize and fund a digitized archive of information on polio, and living with polio, that is relevant to all neuromuscular disabilities. And it has been working with other organizations to include rehabilitation for polio survivors in the current program for the worldwide eradication of polio.

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