G.ImNmI.'S FOURTH INTERNATIONAL

POLIO & INDEPENDENT LMNG CONFEWNCE

Thursday, June 4,1985 9:00 a.m. through

Sunday, June 5 1987,4:00 p.m.

Sheraton St. Louis Hotel St. Louis, Missouri

ORGANIZED AND SPONSORED BY

Gazette International Networking Institute (G.I.N.I.)

4502 Maryland Avenue, St. Louis, Missouri 63108 U.S.A. 3141361-0475

IN COOPERATION WITH Disabled Peoples' International

International Polio Network National Council of Independent Living

Rehabilitation International Roosevelt Warm Springs Foundation

World Rehabilitation Fund, Inc.

AGENDA

WEDNESDAY, JUNE 3 7:OO-9:30 PM Welcome Reception East Ballroom, Third Floor 4:30-9:30 PM Registration Ballroom Foyer, Third Floor

THURSDAY, JUNE 4 8:00 AM-5:00 PM Registration Ballroom Foyer, Third Floor

Ballroom, Third Floor LATE EFFECTS OF POLIO: SYMPTOMS 9:00 AM Welcome: Gini Laurie, William Landau, MD

9:15-10:45 AM Muscle Weakness Moderator/Discussant: David Wiechers, MD Panelists: Roberta Simon: RN - polio survivor, James Agre, MD, Neil Cashman, MD, Marinos Dalakas, MD, Pat Andres, RPT

10:45-11: 15 AM Break 11 : 15 AM-12:30 PM Fatigue

Moderator/Discussant: Frederick Maynard, MD Panelists: Lauro Halstead: MD - polio survivor, Neil Cashman, MD, Richard Owen: MD, William Waring, MD

12:30-2:00 PM Lunch 2:OO-3:30 PM Pain

Moderator/Discussant: Richard Owen?; MD Panelists: Nancy Carter* - polio survivor, Marny Eulberg?; MD, Frederick Maynard, MD, Peggy Portwood, MD, Laura Smith, PT, PhD

3:30-3:45 PM Break 3:45-5:15 PM Sleep, Breathing, and Swallowing Problems

ModeratorIDiscussant: Geoffrey Spencer, OBE, MB, BS, FFARCS Panelists: Joyce Tepley?; MSW - polio survivor, Augusta Alba, MD, Redento Ferranti, MD, D. Armin Fischer, MD, Ernest Johnson, MD, Hugh Newton-John, MD, Oscar Schwartz, MD, Susan Sortor, RRT

5:30-6:30 PM Cash Bar Ballroom Foyer, Third Floor 6:30-8:00 PM Dinner Ballroom 8:OO-9:30 PM Section 504: Past, Present, and Future Ballroom Moderator: Judy Heumann*

Eunice Fiorito?; Ed Roberts?; Phyllis Rubenfeld: EdD, Max Starkloff*

FRIDAY, JUNE 5 8:00 AM-5100 PM Registration Ballroom Foyer, Third Floor

Ballroom, Third Floor LATE EFFECTS OF POLIO: TREATMENT & RESEARCH 9:OO-10:30 AM Exercise~Weight Control

Moderator/Discussant: Stanley Yarnellf MD Panelists: Dorothy Woods Smith: RN -polio survivor, Rubin Feldman, MD, Annette Hise, RD, Richard Owen: MD, Jacquelin Perry MD

10130-11:OO AM Break

AGENDA (continued)

FRIDAY, JUNE 5 (continued)

11 :00 AM-12:30 PM Bracing, Mobility, & Seating ModeratorIDiscussant: Jacquelin Perry MD Panelists: Jane Dummer* -polio survivor, Glenn Ham-Rosebrock: C.O., Ann Hueter, PT, Virginia Nelson, MD, Laura Smith, PT, PhD

4:OO-5:00 PM Boulevard A

Lunch Speaker: William Rea: MD - "Environmental Influences" ResearchIPolio Immunization ModeratorIDiscussant: Lauro Halstead: MD Panelists: Phillip Baker, MD, Mazher Jaweed, PhD, Li Qi-Hong, MD, Michael McQuestion, Jonathan Ramlow, MPH, Rev. Robert Ronald: SJ, Geoffrey Spencer, OBE, MB, BS, FFARCS, Anthony Windebank, MD Patricia Outland, PhD candidate, Adelphi University Interviews with polio survivors for new study of age at onset. Volunteers needed who contracted polio before age 6 OR after age 12.

4:OO-5:00 PM Workshop: Face Masks and Ventilatory Adaptations Boulevard B 6:OO-10130 PM Shuttle Buses To and From St. Louis Union Station Sheraton Entrance

SAJZTRDAY, JUNE 6 8:00 AM-5:00 PM Registration Ballroom Foyer, Third Floor 8:30-10:OO AM Complimentary Continental Breakfast, Courtesy of International Polio Network Ballroom Foyer, Third Floor 8:30-10:OO AM Workshop: Post-Polio Clinic Physicians & Staff Boulevard A&B Moderator: Stanley Yarnell: MD

8:30-10:OO AM East Ballroom

Workshop: Post-Polio Support Group Leaders Moderator: Jack Burney*

Ballroom COPING Psychology of Disability Moderator/Discussant: Irving Zola: PhD Charlene Bozarth: OTR, Carol Gill: PhD, Caroline KaufmannT PhD, Phyllis, Rubenfeld: EdD

11:15 AM-12:30 PM Workshops: Coping Relationships Boulevard A, Boulevard B, Coping Relationships: Spouses Lee Room, Eads Room Field Room Coping Relationships: Parents Laclede Room Coping Relationships: AttendantsIFriends 12:30-2100 PM Lunch Ballroom Speaker: Roberta Trieschmann, PhD - 'Aging and Disability"

Coping with StressIStress Management Paul Duckro, PhD Break Coping with EmploymentIUnemployment Moderator/Discussant: Robert Crowe Panelists: Jane DummerT Hank Graden, Susan Suter*

5:OO-6:00 PM Pat Outland, PhD candidate, Adelphi University Interviews continued *disabled

( AGENDA (continued)

SATURDAY, JUNE 6 (continued)

5:30 PM Hosp. Suite 410

6:30'7:30 PM Ballroom Foyer 7:30 PM Ballroom 9:30-Midnight Ballroom

Roman Catholic Mass

Reception for Justin Dart, Jr., Ted Kennedy Jr., and Tamara Tretyakova Cash Bar Banquet

Disco

SUNDAY, JUNE 7 8:00 AM-Noon Registration Ballroom Foyer 8:OO-9:00 AM Ballroom Foyer

Complimentary Continental Breakfast, Courtesy of lnternational Polio Network

Ballroom 9:OO-10:OO AM

4:00 PM 6:30-9:00 PM Hosp. Suites 410,414

INDEPENDENT LIVING Lessons from American Experiences with European Independent Living World Rehabilitation Fund Fellows Moderator/Discussant: Adolf Ratzka: PhD Gerben DeJong, PhD, Jack Genskow: PhD, Gini Laurie, Marilyn Saviola* Cultural Attitudes Toward Disability & Independent Living Worldwide Moderator: Eileen Giron* Representatives from the following countries: Australia England South Africa Laurie Alsop* Patricia Rock* Friday Mavuso* Michelle Castagna* Germany Michael DuToit* Wilma Davies* Uwe Frehse* Sweden Austria Japan . Adolf RatzkaT PhD Gottfried Wetzel Akiko Saito Taiwan Brazil Lesotho Rex Bob Ronald: SJ Marisa Do Nascimento Paro* hot so Petje* USA Canada Mauritius Marca BristoT RN Henry Enns* Zohra Rajah* Ramona Garcia: RN China Netherlands Diana Medicine Stone Liu Zhirui, MD Geurt Heykamp * Judge Anderson* Denmark New Zealand June Kailes* Bente Madsen* Phillipa Morrison* Zaire El Salvador Pakistan Lwambwa Tshany* Eileen Giron* Farhat Rashid Zimbabwe

Joshua Malinga* Break Cultural Attitudes (continued) Moderator: Patricia Rock* Lunch Cultural Attitudes ( continued) Moderators: Henry Enns* and Marca BristoT RN

-

-

i

Adjournment Farewell Buffet

*disabled

James Agre, MD, PhD University of Wisconsin Hospitals Madison, Wisconsin

Augusta Alba, MD Goldwater Memorial Hospital New York, New York Laurie Alsop* Disability Advisory Council of Australia Petersham, New South Wales, Australia Judge Anderson 111* St. Louis, Missouri Patricia Andres, RPT New England Medical Center Boston, Massachusetts Philip Baker, MD Napier Hospital Napier, New Zealand Charlene Bozarth, OTR* Michigan Polio Network Lansing, Michigan

Marca Bristo, RN* National Council on Independent Living Chicago, Illinois

G. Jackson Burney* Charlotte Polio Survivors Association Davidson, North Carolina

Nancy Carter* Nebraska Polio Survivors Association Omaha, Nebraska Neil Cashman, MD Montreal Neurological Institute Montreal, Quebec, Canada Michele Castagna* Disabled Persons Bureau Alice Springs, Northern Territory

Australia

Robert Crowe Attorney at Law St. Louis, Missouri Marinos Dalakas, MD National Institutes of Health Bethesda, Maryland

Justin Dart, Jr.* Commissioner, Rehabilitation

Services Administration Washington, DC Gerben DeJong, PhD National Rehabilitation Hospital Washington, DC

Paul Duckro, PhD St. Louis University Medical Center St. Louis, Missouri

Jane Dummer* Social Security Administration Baltimore, Maryland

Michael DuToit* Self Help Association of Paraplegics Orlando, South Africa

Henry Enns* Disabled Peoples' International Winnipeg, Manitoba, Canada

Marny Eulberg, MD* Mercy Medical Center Denver, Colorado

Rubin Feldman, MD University of Alberta Hospitals Edmonton, Alberta, Canada Redento Ferranti, MD Gaylord Hospital Wallingford, Connecticut

Eunice Fiorito* Rehabilitation Services Administration Washington, DC

D. Armin Fischer, MD Rancho Los Amigos Medical Center Downey California Frank* and Florence Frisina PolioEpic Tucson, Arizona

Uwe Frehse* Stiftung Pfennigparade Munich, West Germany

Ramona Garcia, RN* . Resources for Independent Living

Sacramento, California

Jack Genskow, PhD* Sangamon State University Springfield, Illinois

Carol Gill, PhD* Clinical Psychologist Sherman Oaks, California Eileen Giron* Grupo Independiente Pro

Rehabilitacion Integral San Salvador, El Salvador Hank Graden, MEd Div. of Vocational Rehabilitation Raleigh, North Carolina Lauro Halstead, MD* National Rehabilitation Hospital Washington, DC Glenn Ham-Rosebrock, CO* Los Angeles, California

Judy Heumann* World Institute on Disability Berkeley California

Geurt Heykamp* FOKUS Ten Boer, The Netherlands

Annette Hise, RD Gaylord Hospital Wallingford, Connecticut

Ann Hueter, RPT Mercy Medical Center Denver, Colorado Mazher Jaweed, PhD Thomas Jefferson University Hospital Philadelphia, Pennsylvania Ernest Johnson, MD Ohio State University Hospital Columbus, Ohio

June Kailes* Westside Center for Independent Living Los Angeles, California

Caroline Kaufmann, PhD* University of Pittsburgh Pittsburgh, Pennsylvania Ted Kennedy, Jr.* Facing the Challenge, Inc. Boston, Massachusetts

William Landau, MD Barnes Hospital St. Louis, Missouri Gini Laurie Gazette International Networking

Institute (G.I.N.I.) St. Louis, Missouri Li Qi - Hong, MD Beijing, Peoples' Republic of China Liu Zhirui, MD Beijing, Peoples' Republic of China Bente Madsen* Copenhagen, Denmark

Joshua Malinga* Bulawayo, Zimbabwe

Friday Mavuso* Self Help Association of Paraplegics Orlando, South Africa Frederick Maynard, MD University of Michigan Medical Center Ann Arbor, Michigan

Michael McQuestion Rotary International Evanston, Illinois

*disabled

FACUIX'Y (continued)

Diana Medicine Stone Edward Roberts* Susan Suter* Mandan Center for Independent Living World Institute on Disability Illinois Department of Rehabilitation Mandan, North Dakota Berkeley California Services Phillipa Morrison* Patricia Rock* Springfield, Illinois Napier, New Zealand Community Aide Programme Joyce Tepley, MSW* Virginia Nelson, MD London, England Houston, Texas University of Michigan Medical Center Allison Roller* Roberta Trieschrnann, PhD Ann Arbor, Michigan Post-Polio Research & Training Scottsdale, Arizona Edward Newrnan, PhD Program Lwambwa Tshany* Temple University Ann Arbor, Michigan Regional de la Ligue pour 1'Integration Philadelphia, Pennsylvania Rev. Robert Ronald, SJ* Sociale des Handicapes et Invalides Hugh Newton-John, MD, FRACP Operation De-Handicap Physiques Fairfield Infectious Diseases Hospital Taipei, Taiwan Lubumbashi, Zaire Fairfield, Victoria, Australia Phyllis Rubenfeld, EdD* William Waring, MD Richard Owen, MD* Hunter College University of Michigan Medical Center Sister Kenny Institute New York, New York Ann Arbor, Michigan Minneapolis, Minnesota Akiko Saito Gottfried Wetzel Marisa do Nascimento Paro* Tokyo, Japan Salzburg, Austria Sao Paulo, Brazil Richard Saltzstein, MD* David Wiechers, MD Jacquelin Perry, MD Curative Rehabilitation Center Ohio State University Hospital Rancho Los Amigos Medical Center WauwatOsal Columbus, Ohio Downey California Marilyn Saviola* Anthony Windebank, MD Khotso Petje* Center for Independence of the Mayo Clinic Lesotho National Association of Disabled in New York Rochester, Minnesota

Disabled New York, New York Stanley Yarnell, MD* Maseru, Lesotho Oscar Schwartz, MD St. Mary's Hospital and Medical Center Peggy Portwood, MD St. Mary's Health Center San Francisco, California Sacramento Medical Rehabilitation St. Louis, Missouri Irving Kenneth Zola, PhD*

Group Roberta Simon, RN* Brandeis University Sacramento, California Polio Network of Illinois Waltham, Massachusetts Zorah Rajah* Darien, Illinois Fraternit6 Mauricienne des Malades Dorothy Woods Smith, RN*

& Handicapes Maine Polio Network Quatre Bornes, Mauritius Westbrook, Maine Jonathan Ramlow, MPH Laura Smith, PT, PhD University of Pittsburgh The Institute for Rehabilitation Pittsburgh, Pennsylvania and Research Farhat Rashid Houston, Texas

Rehabilitation Centre for Physically Susan Sortor, RRT Disabled Dallas Rehabilitation Institute

Peshawar, Pakistan Dallas, Texas Adolf Ratzka, PhD* Geoffrey Spencer, OBE, MB, BS, FFARCS Royal Institute of Technology St. Thomas' Hospital Stockholm, Sweden South Western Hospital Judith Raymond London, England International Polio Network Max Starkloff* St. Louis, Missouri Paraquad William Rea, MD* St. Louis, Missouri

Environmental Health Center Dallas, Texas

*disabled

ACKNOWLEDGEMENTS

Conference Coordinators Gini Laurie Judith Raymond

Planning Committee Augusta Alba, MD Susan Armbrecht* Charlene BozarthT OTR Doris Brennan* G. Jackson Burney* Marca BristoT RN Penny & Tanner Chrisler Henry Enns* Jack GenskowT PhD Richard Coodwin* D. Armin Fischer, MD Judy Heumann* Joseph Kaufert, PhD Caroline KaufmannT PhD Joseph Leone Frederick Maynard, MD Mickie McCrawT ATR Andrea Rathbone Phyllis RubenfeldT EdD Oscar Schwartz, MD Max Starkloff* Martha Stitt, ATR

Honorary Advisory Committee Justin Dart, Jr.* The Rt. Hon. The Earl of Dunraven* Ted Kennedy Jr. * Itzhak Perlman* James Roosevelt Albert Sabin, MD Jonas Salk, MD Geoffrey Spencer, OBE, MB, BS, FFARCS

Banquet Committee Chair: Joseph Leone Penny & Tanner Chrisler Gloria Gerich Joan and Robert O'Reilly Leslie & Michael Webb

Farewell Buffet The Chrisler Family

I ExhibitIAdvertising , Tanner Chrisler

Fundraising Chair: E Howard Manning Ed Finkelstein Arthur Hoffman Oscar Schwartz. MD

Publicity Ed Finkelstein, Unicom Group Susan Purvis, Unicom Group

Photography Korky Buhr

Registration Chair: Joan O'Reilly Nancy Caverly* Robin Christenson* Anna Maria Chura Richard Deverell Susan Donne11 Jane Dummer* Gloria Gerich Sister Pat Hottinger Ellie Kavanagh Joseph Leone Robert O'Reilly I1 Andrea Rathbone Harriet Switzer Telephone Pioneers of America Kay Thurman* Jan White*

Translators Marcus Allen, PhD Sr. Ann Cornet, S.H. Tshiswaka Kayembe, MD B.C. Lesslie Bryce Mouw Albert L. Schweitzer I11

Transportation Chair: Larry Fletcher, Missouri Easter

Seal Society Korky Buhr, Victorious Missionaries Sheldon Caldwell, St. Louis Society

for Crippled Children Ronda O'Farrell, Project S.T.A.R.T. Colleen Starkloff, Paraquad

St. Louis Union Station The Caverly Family Mary Kaiser Ronda O'Farrell Telephone Pioneers of America

Special Patrons Mickie Martin Cammerer CITICORP General American Life Roosevelt Warm Springs Foundation Southwestern Bell Unicom Group Gertrud Weiss

Special Thank You . . . Ellen Conant Earl Crenshawe, Telephone Pioneers

of America Don Faustich, Joseph Witek Florist Tom Kelly Heritage Communications Burt Knip, Telephone Pioneers of

America John Lodato & Dan Long, Sheraton

St. Louis Hotel Ned Maniscalco, AT&T Joe Neels, Home Health Care

Equipment Services Tim North, Hoover Audio-Visual Sheryl Prater, Just Your Type Dale Rohman, George Waldbart Florist Ann C. Sheehan Ann Y Sheehan Jim Sweet Robin Tate, Contemporary Productions Jean Wells, Montclair Travel

Amigo Mobility International BOOTH 10

LIFECARE BOOTH 5

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Terri Smith, National SaleslAdvertising Coordinator Geoff Waters, National Sales Manager Product: Amigo Standard, Amigo RWD, Levo Product: Ventilators

Bear Medical Systems, Inc. BOOTH 8 2085 Rustin Ave. Riverside, CA 92507 Larry Ten Eyck, Product Manager Product: BEAR 33 Volume Ventilator

The Braun Corp. BOOTH 4 1014 S. Monticello St. Winimac, IN 46996 Don Reid, Regional Sales Manager Product: Lift Vans

Electric Mobility Corp. BOOTH 6 # 1 Mobility Plaza Sewell, NJ 08080 Doug Baynes, Regional Sales Manager Product: 3-Wheeled Electric Vehicles

Everest & Jennings, Inc. BOOTH 2

3233 E. Mission Oaks Blvd. Camarillo, CA 93010 Janice Hopkins, Sales Product: Lightweight Wheelchairs

Gazette International Networking Institute (G.I.N.I.) BOOTH 9

Prentke-Romich Co. BOOTH 1 1022 Hey1 Rd. Wooster, OH 44691 Jim Fiss, Teri Madak, Sales Product: Augmentative Communication Aids1

Environmental Control Systems

Puritan-Bennett Corp. BOOTH 3 4302 Clayton Ave. St. Louis, MO 63110 David Stewart, Branch Manager Product: VentilatorsIOxygen Systems

Target Industries, Inc. BOOTH 7 PO. Box 657 E. Windsor, CT 06088 Robert Brophy Sales Product: Lift Vans and Van Conversions

Round the clock ventilator service courtesy of Jim Campbell, Bruce Harrell, Geoff Waters, and Jim Seeley, LIFECARE.

4502 Maryland Ave. St. Louis, MO 63108 Wheelchair repair service courtesy of Joe Neels Product: Polio and Independent Living Publications and Home Health Care Equipment Services.

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Valor Kevlar Be l ted Grey

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