About PHI - Post Polio

Our Mission Statement

Post-Polio Health International’s mission is to collect, preserve and make available research and knowledge to promote the well-being and independence of polio survivors, home ventilator users, their caregivers and families, and to support the health professionals who treat them.

Post-Polio Health International (PHI), incorporated as a 501(c)3 – a non-profit – in 1960, also "does business as" International Ventilator Users Network (IVUN). Post-Polio Health International is governed by a Board of Directors and has a paid staff of two. Accounting, design and editorial services are provided by independent contractors.

Our Founder, Gini Laurie

Saint Louis’ Gini Laurie worked to end institutionalization of people with disabilities. Born Virginia Grace Wilson in 1913, Gini was named after two older sisters who died of polio. As a hospital volunteer, she founded Rehabilitation Gazette, which became an internationally known advocacy journal. Known as the “grandmother” of the independent living movement, Laurie urged people with all kinds of disabilities to work together to end institutionalization and to support independence. In 1974, she helped found the American Coalition of Citizens with Disabilities. She died in 1989, not long before the Americans with Disabilities Act at last realized her goal of equal rights for people with disabilities.

Gini Laurie is remembered with a permanent exhibit in the Emerson Electric Center of the Missouri History Museum (MHS).

Gini Laurie holding the prestigious Saint Louis Award that she received in 1986.

History of PHI

1958

Gini Laurie becomes editor of Toomeyville Jr. Gazette, the mimeographed newsletter for Toomey Pavilion in Cleveland, Ohio, a respiratory center for poliomyelitis patients.

1960

Incorporates as the International Iron Lung Polio Assistance, Inc.

Toomeyville Jr. Gazette changes name to Toomey j Gazette.

1964

Changes name to Iron Lung Polios and Multiplegics, Inc.

1970

Changes name to Rehabilitation Gazette, Inc.

Toomey j Gazette changes name to Rehabilitation Gazette.

1971

Moves from Chagrin Falls, Ohio, to 4502 Maryland Avenue, Saint Louis, Missouri.

1976

Gini Laurie writes Housing and Home Services for the Disabled, Elderly, and Retarded, published by Harper & Row.

1979

Publishes letter by polio survivor regarding new problems.

1981

Coordinates first conference, Chicago, Illinois – "What Ever Happened to the Polio Patient?"
Proceedings Photographs

1983

Coordinates Second International Post-Polio Conference and Symposium on Living Independently with Severe Disability, Saint Louis, Missouri.
Proceedings

Changes name to Gazette International Networking Institute, Inc. (GINI).

1984

Hires Judith Raymond as first executive director. Publishes Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors, edited by Gini Laurie, Frederick M. Maynard, MD, D. Armin Fischer, MD, and Judith Raymond.

1985

Joe Laurie, co-editor of the Rehabilitation Gazette and Gini's husband, dies.

Forms International Polio Network (IPN) and begins publication of Polio Network News.

Coordinates Third International Polio and Independent Living Conference, Saint Louis, Missouri. Proceedings

Begins publishing Post-Polio Directory, listing clinics, health professionals and support groups knowledgeable about the late effects of polio.

1986

Sponsors Polio Support Group Leaders' Workshop.

1987

Coordinates Fourth International Polio and Independent Living Conference, Saint Louis, Missouri.

Forms International Ventilator Users Network (IVUN) and begins publication of IVUN News.

Judith Raymond Fischer resigns as executive director.

Hires Joan L. Headley as director of International Polio Network.

1988

Sponsors Support Group Leaders' Workshop.

1989

Names Joan L. Headley as executive director.

Coordinates Fifth International Polio and Independent Living Conference, Saint Louis, Missouri.

Establishes The Gini Laurie Endowment after Gini Laurie dies on June 28th.

Begins publishing IVUN Resource Directory within the pages of IVUN News.

1990

Discusses suspending operations.

1991

Sale of 4502 Maryland property; office moves to 5100 Oakland Avenue, Saint Louis, Missouri.

1994

Coordinates Sixth International Post-Polio and Independent Living Conference, Saint Louis, Missouri.

1995

Office moves to 4207 Lindell Boulevard, #110, Saint Louis, Missouri.

Creates The GINI Research Fund with bequest from Thomas Rogers.

1996

Hires full-time assistant.

1997

Coordinates Seventh International Post-Polio and Independent Living Conference, Saint Louis, Missouri.

Hires second full-time assistant. Begins strategic planning.

IVUN Resource Directory published as separate document. Lists health professionals committed to home mechanical ventilation, ventilator users, ventilator equipment and aids with manufacturers' information, plus related organizations, associations and foundations.

1999

Publishes revised edition of Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors, edited by Frederick M. Maynard, MD, and Joan L. Headley, MS.

Co-sponsors Seventh International Conference on Home Mechanical Ventilation, Orlando, Florida.

Continues strategic planning and reaffirms mission.

2000

Coordinates Eighth International Post-Polio and Independent Living Conference, Saint Louis, Missouri.

2001

Awards first grant from The GINI Research Fund.

Co-sponsors Eighth International Conference on Home Mechanical Ventilation, Lyon, France.

Revises Bylaws.

2002

Awards second grant from The GINI Research Fund.

Receives report from first grant from The GINI Research Fund.

2003

Changes name to Post-Polio Health International (PHI) Including International Ventilator Users Network and structure to Membership.

The GINI Research Fund changes name to The Research Fund.

Polio Network News changes name to Post-Polio Health.

IVUN News changes name to Ventilator-Assisted Living.

IVUN Resource Directory changes name to Resource Directory for Ventilator-Assisted Living.

PHI Medical Advisory Committee writes Statement About Exercise for The Survivors of Polio.

Cooperates with the National Jewish Medical and Research Center in presenting American College of Chest Physician (ACCP)'s Ninth International Noninvasive Ventilation Conference: "From the ICU to Home," Orlando, Florida.

2004

Receives report from second grant for The Research Fund.

Joan L. Headley speaks in Osaka, part of the Japanese Ventilator Users Network's symposia in Japan to raise awareness about the need for improved independent living for ventilator users. While in Japan, Ms. Headley also meets with Japan Network for Polio Survivors (JNPS).

Works in conjunction with the John P. Murtha Neuroscience & Pain Institute at Conemaugh Health System in Johnstown, Pennsylvania, to provide monthly conference calls for the Post-Polio Clinic Directors.

Awards third grant for The Research Fund.

2005

Loans archival materials to The Smithsonian Institution for the "Whatever Happened to Polio?"exhibit at the National Museum of American History.

Supports the 10th International Conference on Home Mechanical Ventilation, hosted by Journées Internationales de Ventilation à Domicile (JIVD), Lyon, France.

Coordinates Ninth International Conference on Post-Polio Health and Ventilator-Assisted Living: Strategies for Living Well. Program

2006

Receives funds from Christopher and Dana Reeve Foundation to create guide to assist ventilator users in surviving emergencies.
Completed project (click logo for information) (Spanish)