Post-Polio Health International
Encyclopedia
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.
, 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.
PHI’s core constituency is in North America, but its networks of polio survivors, clinicians, scientists, and historians have always been widely international. This is true also of its medical and consumer advisory committees (the latter now being explicitly an international committee), attendance at its international conferences, the extent to which it communicates with polio and disability organizations in Europe
, South America
, Asia
, Australasia
, and Africa
, and the extent to which its work is known by international organizations. PHI also holds a substantial archive of materials on living with polio.
PHI is not itself a support group
, but rather a network and resource for such groups. It is not a treatment facility, but rather a directory to such facilities and a reference desk for information about specific polio or ventilator related problems. Its many publications such as its Handbook, its two quarterly newsletters, its informational brochures on the late effects of poliomyelitis (published in Chinese
, Persian
, French
, German
, Italian
, Japanese
, and Spanish
), and its occasional formal statements on controversial issues such as physical exercise
and on anesthesia
for people with neuromuscular disabilities are widely referenced.
ended, the March of Dimes
had changed its mission from polio to birth defects; most of the special rehabilitation
hospitals and clinics devoted to polio survivors were closing; clinical specialists in polio were scattering. Polio survivors (substantially more in 1960 than the CDC
-estimated one million in the US who were still alive in 1995) were often isolated from the support needed to cope with maturing and aging with a significant physical disability.
PHI at first devoted itself to making sure polio survivors could stay in touch with each other as needed, and with clinicians who had special expertise with polio. These efforts evolved into a variety of publications aimed at providing authoritative information on health issues for polio survivors, and on mainstream opportunities for them – as well as for other people with significant physical disabilities – in education, employment, family life, travel, and leisure activities. The organization’s magazine (until 1985), The Rehabilitation Gazette, had those matters as its dominant themes.
By the late 1960s and early 1970s, PHI was also at the forefront of what has come to be called the independent living
movement (or as Gini Laurie preferred to call it, the interdependent living movement) and was also involved in advocacy for the US 1973 Rehabilitation Act
. Accessibility
(of public places, education, governmental institutions, and of transportation and accommodations) was a major theme, as was the development of an effective system of home health care and personal attendants to ensure that people with serious physical disabilities would be able to live in the community of adults rather than as perpetual dependents within families or institutions.
Toward the end of the 1970s, PHI began to receive an increasing number of reports from polio survivors of new symptoms – a constellation of fatigue, decreased endurance
, increased muscle weakness and pain
– that sounded like a repeat of some of the early symptoms of poliomyelitis, or perhaps an accelerated aging process. In concert with clinicians, researchers, and polio survivors, PHI began to publish material on these “late effects of poliomyelitis,”. And in 1981 PHI convened the first of its international post-polio conferences to address this issue.
There have now been nine international PHI conferences on post-polio syndrome
and other topics having to do with living and aging with polio. These “St. Louis conferences” as they are often called in polio circles, are not always held in 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, as support groups for polio survivors began to form throughout the US and elsewhere, PHI offered help to such groups in various ways – especially through its conferences and publications (including directories of support groups and health care professionals), but also through arranging speakers, assisting with local or regional conferences, and sponsoring workshops. PHI is not itself a support group, but rather remains a network in support of such groups, and in support of individual polio survivors, clinicians, and researchers.
Until 1984, though always incorporated as a nonprofit organization, PHI had operated entirely with a large network of volunteers, organized and led by Gini Laurie. Financial support came from donors and subscribers to the Rehabilitation Gazette. But after the 1983 St. Louis conference, it was evident that a more formal organizational structure was required. Judith Raymond was hired as Executive Director in 1984, and took over PHI’s day-to-day operations as well as editorial work on its publications and organizational work on its conferences. She was succeeded in 1987 by Joan L. Headley, who remains Executive Director today.
Non-profit organization
Nonprofit organization is neither a legal nor technical definition but generally refers to an organization that uses surplus revenues to achieve its goals, rather than distributing them as profit or dividends...
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
Gini Laurie
Virginia Grace Wilson “Gini” Laurie was a central figure in the 20th century development, in the United States, of the independent living movement for people with disabilities...
, 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
International Ventilator Users Network
The International Ventilator Users Network is a nonprofit network of mechanical ventilation users, respiratory health professionals, and ventilatory equipment manufacturers...
(IVUN). PHI’s headquarters are in St. Louis, Missouri
St. Louis, Missouri
St. Louis is an independent city on the eastern border of Missouri, United States. With a population of 319,294, it was the 58th-largest U.S. city at the 2010 U.S. Census. The Greater St...
, 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.
Activities
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 syndromePost-polio syndrome
Post-polio syndrome is a condition that affects approximately 25–50% of people who have previously contracted poliomyelitis—a viral infection of the nervous system—after the initial infection. Typically the symptoms appear 15–30 years after recovery from the original paralytic attack, at an age of...
, and independent living
Independent living
Independent living, as seen by its advocates, is a philosophy, a way of looking at disability and society, and a worldwide movement of people with disabilities working for self-determination, self-respect and equal opportunities...
. It has recently begun to fund a modest amount of scientific research related to its mission – usually pilot studies
Pilot (experiment)
A pilot experiment, also called a pilot study, is a small scale preliminary study conducted in order to evaluate feasibility, time, cost, adverse events, and effect size in an attempt to predict an appropriate sample size and improve upon the study design prior to performance of a full-scale...
, 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
Physical therapy
Physical therapy , often abbreviated PT, is a health care profession. Physical therapy is concerned with identifying and maximizing quality of life and movement potential within the spheres of promotion, prevention, diagnosis, treatment/intervention,and rehabilitation...
for polio survivors in the current program for the worldwide eradication of polio.
PHI’s core constituency is in North America, but its networks of polio survivors, clinicians, scientists, and historians have always been widely international. This is true also of its medical and consumer advisory committees (the latter now being explicitly an international committee), attendance at its international conferences, the extent to which it communicates with polio and disability organizations in Europe
Europe
Europe is, by convention, one of the world's seven continents. Comprising the westernmost peninsula of Eurasia, Europe is generally 'divided' from Asia to its east by the watershed divides of the Ural and Caucasus Mountains, the Ural River, the Caspian and Black Seas, and the waterways connecting...
, South America
South America
South America is a continent situated in the Western Hemisphere, mostly in the Southern Hemisphere, with a relatively small portion in the Northern Hemisphere. The continent is also considered a subcontinent of the Americas. It is bordered on the west by the Pacific Ocean and on the north and east...
, Asia
Asia
Asia is the world's largest and most populous continent, located primarily in the eastern and northern hemispheres. It covers 8.7% of the Earth's total surface area and with approximately 3.879 billion people, it hosts 60% of the world's current human population...
, Australasia
Australasia
Australasia is a region of Oceania comprising Australia, New Zealand, the island of New Guinea, and neighbouring islands in the Pacific Ocean. The term was coined by Charles de Brosses in Histoire des navigations aux terres australes...
, and Africa
Africa
Africa is the world's second largest and second most populous continent, after Asia. At about 30.2 million km² including adjacent islands, it covers 6% of the Earth's total surface area and 20.4% of the total land area...
, and the extent to which its work is known by international organizations. PHI also holds a substantial archive of materials on living with polio.
PHI is not itself a support group
Support group
In a support group, members provide each other with various types of help, usually nonprofessional and nonmaterial, for a particular shared, usually burdensome, characteristic...
, but rather a network and resource for such groups. It is not a treatment facility, but rather a directory to such facilities and a reference desk for information about specific polio or ventilator related problems. Its many publications such as its Handbook, its two quarterly newsletters, its informational brochures on the late effects of poliomyelitis (published in Chinese
Chinese language
The Chinese language is a language or language family consisting of varieties which are mutually intelligible to varying degrees. Originally the indigenous languages spoken by the Han Chinese in China, it forms one of the branches of Sino-Tibetan family of languages...
, Persian
Persian language
Persian is an Iranian language within the Indo-Iranian branch of the Indo-European languages. It is primarily spoken in Iran, Afghanistan, Tajikistan and countries which historically came under Persian influence...
, French
French language
French is a Romance language spoken as a first language in France, the Romandy region in Switzerland, Wallonia and Brussels in Belgium, Monaco, the regions of Quebec and Acadia in Canada, and by various communities elsewhere. Second-language speakers of French are distributed throughout many parts...
, German
German language
German is a West Germanic language, related to and classified alongside English and Dutch. With an estimated 90 – 98 million native speakers, German is one of the world's major languages and is the most widely-spoken first language in the European Union....
, Italian
Italian language
Italian is a Romance language spoken mainly in Europe: Italy, Switzerland, San Marino, Vatican City, by minorities in Malta, Monaco, Croatia, Slovenia, France, Libya, Eritrea, and Somalia, and by immigrant communities in the Americas and Australia...
, Japanese
Japanese language
is a language spoken by over 130 million people in Japan and in Japanese emigrant communities. It is a member of the Japonic language family, which has a number of proposed relationships with other languages, none of which has gained wide acceptance among historical linguists .Japanese is an...
, and Spanish
Spanish language
Spanish , also known as Castilian , is a Romance language in the Ibero-Romance group that evolved from several languages and dialects in central-northern Iberia around the 9th century and gradually spread with the expansion of the Kingdom of Castile into central and southern Iberia during the...
), and its occasional formal statements on controversial issues such as physical exercise
Physical exercise
Physical exercise is any bodily activity that enhances or maintains physical fitness and overall health and wellness. It is performed for various reasons including strengthening muscles and the cardiovascular system, honing athletic skills, weight loss or maintenance, as well as for the purpose of...
and on anesthesia
Anesthesia
Anesthesia, or anaesthesia , traditionally meant the condition of having sensation blocked or temporarily taken away...
for people with neuromuscular disabilities are widely referenced.
History
After the polio epidemics in the United StatesUnited States
The United States of America is a federal constitutional republic comprising fifty states and a federal district...
ended, the March of Dimes
March of Dimes
The March of Dimes Foundation is a United States nonprofit organization that works to improve the health of mothers and babies.-Organization:...
had changed its mission from polio to birth defects; most of the special rehabilitation
Physical therapy
Physical therapy , often abbreviated PT, is a health care profession. Physical therapy is concerned with identifying and maximizing quality of life and movement potential within the spheres of promotion, prevention, diagnosis, treatment/intervention,and rehabilitation...
hospitals and clinics devoted to polio survivors were closing; clinical specialists in polio were scattering. Polio survivors (substantially more in 1960 than the CDC
Centers for Disease Control and Prevention
The Centers for Disease Control and Prevention are a United States federal agency under the Department of Health and Human Services headquartered in Druid Hills, unincorporated DeKalb County, Georgia, in Greater Atlanta...
-estimated one million in the US who were still alive in 1995) were often isolated from the support needed to cope with maturing and aging with a significant physical disability.
PHI at first devoted itself to making sure polio survivors could stay in touch with each other as needed, and with clinicians who had special expertise with polio. These efforts evolved into a variety of publications aimed at providing authoritative information on health issues for polio survivors, and on mainstream opportunities for them – as well as for other people with significant physical disabilities – in education, employment, family life, travel, and leisure activities. The organization’s magazine (until 1985), The Rehabilitation Gazette, had those matters as its dominant themes.
By the late 1960s and early 1970s, PHI was also at the forefront of what has come to be called the independent living
Independent living
Independent living, as seen by its advocates, is a philosophy, a way of looking at disability and society, and a worldwide movement of people with disabilities working for self-determination, self-respect and equal opportunities...
movement (or as Gini Laurie preferred to call it, the interdependent living movement) and was also involved in advocacy for the US 1973 Rehabilitation Act
1973 Rehabilitation Act
The U.S. Rehabilitation Act of 1973 prohibits discrimination on the basis of disability in programs conducted by Federal agencies, in programs receiving Federal financial assistance, in Federal employment, and in the employment practices of Federal contractors...
. Accessibility
Accessibility
Accessibility is a general term used to describe the degree to which a product, device, service, or environment is available to as many people as possible. Accessibility can be viewed as the "ability to access" and benefit from some system or entity...
(of public places, education, governmental institutions, and of transportation and accommodations) was a major theme, as was the development of an effective system of home health care and personal attendants to ensure that people with serious physical disabilities would be able to live in the community of adults rather than as perpetual dependents within families or institutions.
Toward the end of the 1970s, PHI began to receive an increasing number of reports from polio survivors of new symptoms – a constellation of fatigue, decreased endurance
Endurance
Endurance is the ability for a human or animal to exert itself and remain active for a long period of time, as well as its ability to resist, withstand, recover from, and have immunity to trauma, wounds, or fatigue. In humans, it is usually used in aerobic or anaerobic exercise...
, increased muscle weakness and pain
Pain
Pain is an unpleasant sensation often caused by intense or damaging stimuli such as stubbing a toe, burning a finger, putting iodine on a cut, and bumping the "funny bone."...
– that sounded like a repeat of some of the early symptoms of poliomyelitis, or perhaps an accelerated aging process. In concert with clinicians, researchers, and polio survivors, PHI began to publish material on these “late effects of poliomyelitis,”. And in 1981 PHI convened the first of its international post-polio conferences to address this issue.
There have now been nine international PHI conferences on post-polio syndrome
Post-polio syndrome
Post-polio syndrome is a condition that affects approximately 25–50% of people who have previously contracted poliomyelitis—a viral infection of the nervous system—after the initial infection. Typically the symptoms appear 15–30 years after recovery from the original paralytic attack, at an age of...
and other topics having to do with living and aging with polio. These “St. Louis conferences” as they are often called in polio circles, are not always held in St. Louis. The first in the series was held in Chicago
Chicago
Chicago is the largest city in the US state of Illinois. With nearly 2.7 million residents, it is the most populous city in the Midwestern United States and the third most populous in the US, after New York City and Los Angeles...
, and the tenth was held in Warm Springs, Georgia
Warm Springs, Georgia
Warm Springs is a city in Meriwether County, Georgia, United States. The population was 478 at the 2010 census.-History:Warm Springs first came to prominence in the 19th century as a spa town, due to its mineral springs which flow constantly at nearly 32 °C...
, in 2009.
During the 1980s, as support groups for polio survivors began to form throughout the US and elsewhere, PHI offered help to such groups in various ways – especially through its conferences and publications (including directories of support groups and health care professionals), but also through arranging speakers, assisting with local or regional conferences, and sponsoring workshops. PHI is not itself a support group, but rather remains a network in support of such groups, and in support of individual polio survivors, clinicians, and researchers.
Until 1984, though always incorporated as a nonprofit organization, PHI had operated entirely with a large network of volunteers, organized and led by Gini Laurie. Financial support came from donors and subscribers to the Rehabilitation Gazette. But after the 1983 St. Louis conference, it was evident that a more formal organizational structure was required. Judith Raymond was hired as Executive Director in 1984, and took over PHI’s day-to-day operations as well as editorial work on its publications and organizational work on its conferences. She was succeeded in 1987 by Joan L. Headley, who remains Executive Director today.