Post-Polio Health International ( PHI ) is a relatively new name for a non-profit organization that officially started its work in 1960. For years known in the medical, rehabilitation, and defect circles vary as GINI , or International Polio Network , or Gazette Rehabilitation Network, , otherwise known as Gini Jaringan , in honor of Gini Laurie, its founder and the driving force until his death in 1989.
The mission of the IRC is to improve the lives, health and independence of victims of polio, as well as those in the cross-disabled category of home ventilator users, handled through a subsidiary organization called the International Ventilator User Network (IVUN). PHI headquarters is in St. Louis, Missouri, where he has a small paid staff. Otherwise it is run by volunteers, including the board of directors and various advisory committees. Financial support comes from donors, sponsors, members/customers, as well as from a group of "associate members" consisting of local and regional polio support groups.
Video Post-Polio Health International
Activity
PHI publishes two monthly bulletins, Post-Polio Healthcare and Live with Ventilator-Assisted. It runs telephone and answers emails online during working hours, responding to requests from polio victims, doctors, researchers, and journalists. The website is updated almost every working day, and has a searchable archive of information about polio, post-polio syndrome, and self-sustaining life. Recently began funding a small amount of scientific research related to its mission - usually a pilot study, and sometimes for managing research projects for other organizations such as Christopher and Dana Reeve Foundation. Increasingly, it addresses the need to organize and fund the digital information archive on polio, and live with polio, which is relevant for all neuromuscular defects. And has worked with other organizations to include rehabilitation for polio victims in current programs for polio eradication around the world.
The core constituency of the IRC is in North America, but the network of victims of polio, doctors, scientists, and historians has always been international. This is true of the medical and consumer advisory committees (the latter now explicitly an international committee), attending international conferences, the extent to which he communicates with polio and disability organizations in Europe, South America, Asia, Australasia and Africa, and so far where his work is known by international organizations. PHI also keeps a substantial archive of material about living with polio.
PHI is not a support group, but a network and a resource for such groups. This is not a maintenance facility, but a directory for the facility and a reference table for information on a particular polio or ventilator-related problem. The number of publications such as the Handbook , the two quarterly bulletins, the brochures informed about the final effects of poliomyelitis (published in Chinese, Persian, French, German, Italian, Japanese and Spanish), and occasional formal statements on issues controversial issues such as physical exercise and on anesthesia for people with neuromuscular defects are widely referenced.
Maps Post-Polio Health International
History
After the polio epidemic in the United States has ended, the March of Dimes has changed its mission from polio to birth defects; most hospitals and special rehabilitation clinics devoted to polio victims close; clinical specialists in polio scattered. Polio survivors (substantially more in 1960 than the CDC-estimated one million in US surviving in 1995) are often isolated from the support needed to address maturity and aging with significant physical disabilities.
The IRC was initially devoted to ensuring victims of polio can stay in touch with each other as needed, and with doctors who have special skills with polio. These efforts have evolved into publications aimed at providing authoritative information on health issues for victims of polio, and on the main opportunities for them - as well as for others with significant physical disabilities - in education, employment, family life, travel, and leisure activities. Organizational magazines (up to 1985), Rehabilitation Sheets , have them as their dominant theme.
In the late 1960s and early 1970s, the IRC was also at the forefront of what came to be called the independent living movement (or as Gini Laurie prefers to call it, the interdependent life movement) and also engaged in advocacy for the US 1973. Act -The Rehabilitation Center. Accessibility (public places, education, government agencies, and transport and accommodation) are key themes, such as the development of an effective home health care system and personal staff to ensure that people with serious physical disabilities will be able to live in adult communities rather than as perpetual burden in the family or institution.
Toward the end of the 1970s, PHI began receiving an increasing number of reports from survivors of the new symptoms of polio - constellation of fatigue, decreased endurance, increased muscle weakness and pain - which sounds like a repetition of some early symptoms of poliomyelitis. , or perhaps an accelerated aging process. In concert with doctors, researchers, and polio victims, PHI began publishing material on "the final effect of poliomyelitis,". And in 1981 PHI held its first post-polio international conference to address this issue.
There are now nine international PHI conferences on post-polio syndrome and other topics related to life and aging with polio. This "St. Louis Conference" because it is often called a polio circle, is not always held at St. Louis. The first in the series was held in Chicago, and the tenth was held in Warm Springs, Georgia, in 2009.
During the 1980s, when support groups for polio victims began to form across the US and elsewhere, the PHI offered assistance to these groups in various ways - mainly through conferences and publications (including the directory of support groups and health care professionals ), but also through organizing speakers, assisting with local or regional conferences, and sponsoring workshops. PHI is not a support group, but it is a network to support such groups, and to support survivors of polio, doctors, and researchers.
Until 1984, although always incorporated as a nonprofit organization, PHI has operated fully with a network of large volunteers, organized and led by Gini Laurie. Financial support comes from donors and customers to the Rehabilitation Sheet . But after the St. Louis 1983, it is clear that more formal organizational structures are required. Judith Raymond was employed as Executive Director in 1984, and took over the day-to-day operations of the IRC as well as editorial work on the publications and work of his organization at conferences. He was replaced in 1987 by Joan L. Headley, who served as Executive Director for 30 years, retired in 2017. He was replaced by Brian M. Tiburzi on September 1, 2017.
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Source of the article : Wikipedia
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