This Is MS Multiple Sclerosis Knowledge & Support Community

ADVOCACY
PROGRAMS & SERVICES
November 20, 2009
CC: Chapter Presidents
Book and DVD for People with Primary-Progressive MS
Thanks to a generous, unrestricted educational grant from Genentech, the Society now has two new resources, a book and DVD, for people with primary-progressive MS (PPMS), their caregivers and families. People with PPMS account for an estimated 10 percent of the total multiple sclerosis population. With most of the attention focused towards the relapsing-remitting form of MS, people with PPMS often describe themselves as “orphans” of the MS world.
Primary Progressive Multiple Sclerosis - What You Need to Know, is a comprehensive book that discusses the diagnosis of PPMS, treatment and research, rehabilitation, wellness, family and social issues, and life planning. The book was written by Drs. Jack Burks, Nancy Holland and Diana Schneider and published by DiaMedica Publishing.
Bound within the book is a companion DVD, Primary-Progressive Multiple Sclerosis - Perspectives on Moving Forward. The DVD profiles four people living with the significant challenges of PPMS who share their strategies for maintaining health quality of life and planning for life with primary-progressive MS.
Both of these resources are a direct result of a joint National MS Society and MS Association of America conference in 2008. The goal of the meeting was to develop a better understanding of the needs of people PPMS. One outcome was a recommendation to improve the programs and services of this population, including the development of this book and DVD.
Copies of the book/DVD packets are scheduled to be shipped to chapters in December, 2009. There is no charge to chapters for the initial mailing. The number of books provided as part of this mailing was determined by client census. Chapters may wish to distribute the materials at programs that target people with progressive MS, certain self-help groups, and most certainly to individuals known to you to have a diagnosis of PPMS.
In addition to distribution methods managed by chapters, the Information Resource Center will also have copies available for distribution to clients who say they have primary-progressive MS.
Chapter requests for additional copies of the book/DVD packet should be directed Heather Webb at heather.webb@nmss.org. Chapters will be charged for shipping only. It is important to note that there are a limited number of copies of the book/DVD packets available. Once the supply is gone, the books can be ordered through Amazon.com. The book advises readers to call the Society’s 1-800# for a free copy of the DVD (the IRC will distribute). Chapters can request extra copies of the DVD by contacting Heather Webb.
Special thanks go to the Minnesota, New York City - Southern New York, and Wisconsin chapters for their help on this project.
From: John Aden
Senior Manager, Program Development
Programs and Services Department
(303) 698-6100, ext. 15143
john.aden@nmss.org
National Multiple Sclerosis Society 733 Third Avenue New York, New York 10017-3288 Tel +1 212.986.3240 Fax +1 212.986.7981 E-mail nat@nmss.org
Nationalmssociety.org
The National MS Society is proud to be a source of information about MS. Our comments are based on professional advice, published experience and expert opinion, but
do not represent individual therapeutic recommendation or prescription. For specific information and advice, consult your personal physician.

About the book:
Description: Associated with severe and unrelenting symptoms, primary progressive multiple sclerosis (PPMS) is considered incurable. Written by three experts, "Primary Progressive Multiple Sclerosis" helps those affected deal with the physical and emotional issues involved. Jointly sponsored by the National MS Society and the Multiple Sclerosis Association of America, the book explains the nature of the disease and its characteristics, and offers comprehensive multidisciplinary management approaches. These include medical and nursing care, physical and occupational therapy, social support, caregiver and family issues, and mental health and quality of life.