With special appreciation to:

Interviewees

Michael Barnes Professor of Neurological Rehabilitation, University of Newcastle upon Tyne, UK
Kathryn Brennan Member National Programmes Advisory Council, National MS Society, USA
Sandy Burnfield Board Member UK MS Trust, UK
Sanjay Chadha Board Member UK MS Society, UK
Peggy Crawford Clinical Psychologist, Mellen Center for Multiple Sclerosis, USA
Jeremy Hobart Neurological Outcome Measures Unit, Institute of Neurology, UK
Vanessa Hodges Member National Programmes Advisory Council, National MS Society, USA
Ludwig Kappos University Hospital, Basel & Medical Director Swiss MS Society,Switzerland
Peter Kaskel University of Ulm, Germany
Susan Kushner Associate Professor of Physical Therapy, Slippery Rock University,USA
Dawn Langdon Clinical Neuropsychologist andSenior Lecturer, University of
London, UK

Oversight Group

Mike O'Donovan, (Chair) Chief Executive, UK MS Society
Eva Havrdová Chairman, Czech MS Society Medical Advisory Board
Hans-Peter Hartung Department of Neurology, Heinrich-Heine-University, Germany
Tom Houle Member National Advisory Board of Persons with MS. National MS Society, USA
Nicholas G. LaRocca Director Health Care Delivery and Policy Research, National MS Society, USA
Nancy Law Vice President, Client Programmes Department, National MS Society, USA
Elizabeth McDonald Medical Director, MS Society of Australia
Xavier Montalbán Director, Unit of Clinical Neuroimmunology, Hospital Universitari Vall d'Hebron, Spain
Christine Purdy Chief Executive, Multiple Sclerosis International Federation
Mateja de Reya Chief Executive, Slovenian MS Society
Peter Rieckmann Head of Clinical Research Unit for MS and Neuroimmunology, University of Würzburg, Germany
Paul Rompani Deputy Chief Executive, Multiple Sclerosis International Federation
Alan Thompson Medical Director, Neurorehabilitation Unit, Clinical Director & Director of Research and Development at the Institute of Neurology, UK
Susan Tilley Chair, Multiple Sclerosis International Federation Persons with MS International Committee

Work Group

Mike Dugan Chief Executive, National MS Society, USA
Nicholas G. LaRocca Director Health Care Delivery and Policy Research, National MS Society, USA
Nancy Law Vice President, Client Programmes Dept. National MS Society, USA
Christine Purdy Chief Executive, Multiple Sclerosis International Federation
Paul Rompani Deputy Chief Executive, Multiple Sclerosis International Federation
Susan Tilley Chair, MSIF Persons with MS International Committee

Others

Megan Burgess MS Nurse Consultant, Hope Hospital, UK
Caron Caldwell Acting MS Nurse Fund Programme Manager, UK MS Society , UK
Pedro Carrascal Chief Executive, Spanish MS Federation, Spain
Francisco Delgado Chief Executive, Spanish MS Society, Spain
Peter Flachenecker Chairman Neurological Rehabilitation Center Quellenhof, Germany
Marieluise Gilch Chief Executive, Bavaria Chapter, German MS Society, Germany
Cristina Gómez Ortiz Board Member Spanish MS Society, Spain
Maria Jose Flores Spanish MS Society, Spain
Natasa Koudouni Aerobic Trainer, Greek MS Society, Greece
Graham Love Chief Executive, MS Society of Ireland, Ireland
Kostas Michalakis Chief Executive, Greek MS Society, Greece
Allen O’Connor Chairman, MS Society of Ireland, Ireland
Izabella Odrobinska Chief Executive, Polish MS Society, Poland
Anastasios Orologas President, Greek MS Society, Greece
Mahi Orologas Greek MS Society, Greece
Maria Pilar Resta Spanish MS Society, Spain
Dorothea Pitschnau-Michel Chief Executive, German MS Society, Germany
Alun White Board Member UK MS Society, UK
Christiane Zahn Bavaria Chapter, German MS Society, Germany

In addition to the interviewees,

The Oversight Group members, Work Group members and others specifically mentioned above MSIF would like to thank the following for their support in developing the QOL Principles: MSIF’s International Medical & Scientific Board, Persons with MS International Committee and Member Society staff and volunteers, Consortium of MS Centers, International Organization of MS Nurses and the numerous people affected by MS and health professionals who provided valuable comments and suggestions. Most of all MSIF would like to thank Biogen Idec for their shared vision and commitment to improving the quality of life of people with and affected by multiple sclerosis.

Published by:

Published by:
Multiple Sclerosis International Federation
ISBN 0-9550139-0-9

Prepared by:

Michael Trisolini, Ph.D., M.B.A.
Joshua Wiener, Ph.D.
RTI International, Waltham, Massachusetts & Washington, U.S.A.
Deborah Miller, Ph.D. Cleveland Clinic Foundation, Cleveland, Ohio, U.S.A.

RTI International is an independent nonprofit research organization dedicated to conducting research and development that improves the human condition. With a staff of more than 2,500 people, RTI offers innovative research and technical solutions to governments and businesses worldwide in the areas of health and pharmaceuticals, advanced technology, surveys and statistics, education and training, economic and social development, and the environment. For more information visit www.rti.org.

Photographs

Cover photographs provided by Amelia Davis from her book
“My Story: A Photographic Essay On Life With Multiple Sclerosis.”
(Copyright Amelia Davis © 2002), which can be ordered from
www.ameliadavisphotography.com or demosmedpub.com