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We don't take MS lying down: 1991 annual report.

REPORT from the Chairman of the Board

IT is a spirit that has personally infected me for the 14 years I have been a member of the National Board of Directors. I consider it an honor to continue to nourish that spirit as chairman of the National Board. It will be our job to build upon the formidable accomplishments of my predecessor, George Gillespie. This may not be an .easy matter in the present economy but it is a challenge I know we will meet. The National Board, working with staff, had the judgment to anticipate a fiscal problem early enough in the year and to take a number of steps to avert it. Similarly, chapters took early actions wherever possible to attempt to balance expenditures with lower than anticipated revenues. Contrary to the general trend, the Society'registered a modest 2.6% increase in nationwide income and avoided a significant deficit.

All major initiatives are being fully implemented and in the year ahead we are placing special emphasis on the crucial subject of our health care: system which seriously underserves our members.

We have wisely budgeted conservatively for FY 1992. We continue to make investments for the future. We want to position ourselves for the inevitable upturn m the economy so that our growth in revenues will return to the levels we recently achieved. With these substantial resources we will be able to significantly increase the level of services and the funding of research.

Luis E. Levy

The cover of the National Multiple Sclerosis Society 1991 Annual Report reflects the theme of its new public service advertising campaign, "Don't Take MS Lying Down. "It is a fitting indicator of the spirit that moves the Society, its members and its loyal friends.

Report from the President and Chief Executive Officer *

Early in the fiscal year, we effected a number of management strategies to help us maintain a competitive edge. Foremost among these was expanding staff capabilities in almost every aspect of Society operation. Two examples: Increasing staff proficiency in seeking and obtaining grants enabled us to install two new, very needed Society-wide service programs, one in the area of support for families and the other in employment. Additionally, 78% of our chapters applied locally for service program grants, with a remarkable 90% success in securing at least one. Incorporating a new data/analytic system into our marketing department permitted us to pinpoint the areas in which our fund raising efforts would be most productive. Consequently, the SUPER CITIES WALK[sm} upped its income by 25%, earning $18 million. Bike tours went from $20.45 to 21.60 million and the direct mail campaign rose 18*70. At the same time, national fund raising expense were cut back. Our nationwide income for fiscal '90. was $94,964,245, a 2.6% increase over '90. At the National office level, management and fund raising expenses were 23%, 3% below fiscal '90.

Other highlights: We spent $10,851,067 on research grants and fellowships, $707,098 more than the previous year; we initiated an audio cassette service to visually impaired readers of INSIDE MS; and we achieved greater public visibility than ever before.

In June, General Michael "Mike" Dugan, United States Air Force (ret.) took over as CEO. I assumed a new role as president emeritus until my retirement in the fall of 1993. I look forward to this final chapter as an opportunity to continue to contribute to the Society through the generation of major gifts.

Thor Hanson

We were able to emerge from a year of national economic difficulty on the plus side of the ledger, with major programs strong, solid and positioned to advance. *At the time the Annual Report was published (April 1992), Thor Hanson was president. General Michael J. Dugan assumed the office in June.


During 1991, Society programs in immunology accounted for some 30% of all dollars expended. Scientists continued to tackle the key problem of understanding the specific immune system problems in the disease with the goal of developing specific, safe and effective immunotherapies. Important research has focused on determining how many types of immune system T-lymphocyte cells may be involved in MS and how they might be blocked in treatment studies.

An additional 20% of our funds the largest percentage ever -- supported research on myelin, the fatty insulating material around nerve fibers in the brain and spinal cord, which is damaged in MS. With the recognition that functional recovery for people with MS may be possible if damaged myelin can be repaired or replaced, scientists have learned more about the actual molecular and genetic signals which cause myelin to grow during development, and they are beginning to apply such knowledge to the difficult problem of myelin regrowth and regeneration after disease.

A third area of research in 1991 was genetics, a field growing rapidly in new information and in importance to MS. A host of new technologies which now allow us to understand genetic predisposition to complex diseases prompted the Society to embark on a major, three-year, half million dollar study to understand inheritance patterns and the genes responsible for susceptibility to MS. Past research has shown a slightly greater risk for MS to occur in multiple cases in families. It has also shown that there are multiple genes (rather than a single gene, as is the case in some other diseases) which may confer susceptibility to the disease. Knowing the genetic patterns may allow us to predict the course of the disease and who might get it. It will also help with the development of specific, safe and effective therapies.

Nineteen ninety-one also saw a continuing increase in. numbers of quality control trials for new therapies for MS: among others, trials of Interferon for relapsing-remitting disease continued and are nearing completion; a long-awaited trial of Copolymer I for relapsing-remitting disease was begun in 11 United States centers; and preliminary safety studies were initiated using specific monoclonal antibodies and peptide blocking agents in progressive disease.


Working, partaking, contributing, enjoying one's family and community to the best of one's ability- that is the wish and the right of people with multiple sclerosis. Helping them achieve this goal is a mandate of the National Multiple Sclerosis Society.

With enforcement in of the first phase of the Americans with Disabilities Act (ADA), a strong employment program became a top '91 Society priority, aided by a $60,000 grant from Philip Morris USA. The NMSS's long-term care campaign, officially launched in 1990, has begun to achieve a strong identity. Forty-five chapters are involved in the project at this point, providing education to the public and to professionals, initiating grant proposals and supplying information to legislators about extended care options that would pertain to people with MS. The Society embarked on another major initiative this year. It applied for and was awarded a $200,000 grant from the American Contract Bridge league to be used to help chapters formulate a variety of family support services.

Along with these three major innovations, the full complement of basic services continues to thrive. Among these, two creative support systems showed particular strength: the self help groups and the peer counseling programs. Self-help groups can vary enormously in composition, but one element is constant: a group of peers meets regularly with no professional counselor present. There are over 1400 such groups in the Society now and their numbers are growing. The peer counseling program generally adopts a one-on-one approach, using people with MS who have had special training to assist others. Fifty-three chapters have already established peer counseling programs.

It is probable that the most fundamental element in the service mandate is the dissemination of information. And at the heart of our information system lies the Information Resource Center (IRC). Located in the National office, it provides a unique and valuable resource not only to our own staff but to the public and to professional groups across the country. Over 29,000 queries were handled last year by the center, which also mans, with a professional staff, the Society's vital toll-free information number: 1-800-LEARN MS.

At the chapter level, among the most successful of the educational outreach programs was the National Teleconference. The 1991 teleconference attracted 5300 people in 70 chapters to participate from 270 sites- a substantial 33*70 increase over 1990.


One of the Society's most aggressive and far-reaching efforts to improve the lives of people with multiple sclerosis and their families is embodied in its public advocacy for change.

This has been a year of enormous challenge for Society as its members responded to the need to participate in the developing consensus for health care reform and long-term care services. Because the lives of individuals with MS are so directly affected by these public policy decisions, their concerns must be stated and restated before panels, committees, commissions of the executive branch and Congress and also of the state legislature and governor's offices.

This work was accomplished by the many chapter volunteers and staff who worked together to develop statements that portrayed the enormous and special problems experienced by people with MS under our present health system with its lack of longterm care. They carried these facts and case examples to Congressional and executive branch hearings around the country on more than 35 occasions of testimony on health and disability related issues.

At the state level, chapters worked to articulate public policy changes necessary for people with MS in nearly all 50 states as state legislators grappled with many of the same crucial issues of health reform. Six states with multiple chapters organized coalitions and held state advocacy training and outreach on their priority issues.

The Society-wide commitment of hundreds of volunteers to work together and with their government officials at all levels to improve the lives of individuals and families with MS is deep and genuine; it brings the greatest hope of needed change.


Despite a devastating disease called multiple sclerosis, one third of a million families continue to battle vigorously for their futures. Reaching the public with their stories to promote understanding and change is the goal of the Society's wide-ranging awareness effort.

Through features placed in magazines ranging from the Ladies Home Journal and People to Rehabilitation Medicine and Sports Illustrated, the eight participants in the Society's 1991 public service ad campaign, "Winners," were able to communicate the reality and diversity of MS. Los Angeles Times readers had the opportunity to learn from MS National Achievement award winner, Hugh McDonough, about the community advantages of integrating physically challenged people into the work force.

Walkers, watchers and well-wishers learned about our cause and participated in it through massive nationwide media coverage of the SUPER CITIES WALKs.M Project Rembrandt? our biennial juried exhibition by artists with multiple sclerosis, went on a national sponsored tour for the first time in its history, reaching some 35,000 museum visitors with its unique message. INSIDE MS, the Society's national magazine, communicates its own particular message, drawing upon the day-to-day trials and triumphs of people fighting multiple sclerosis.

All in all such Society efforts at the national and community level resulted in over 300 million media messages reaching, touching and moving the public to action.


Education about multiple sclerosis for health professionals is a major Society concern. Among its 1991 highlights: The Professional Speaker Placement Program, which makes MS specialists available to speak at national association meetings, enabled us to present information about MS to over 1,000 doctors, nurses and other allied health care professionals at four major conferences ... Educating and informing neurologists who are not necessarily MS specialists is also a primary goal. A pilot study is under way in which select chapters are providing a highly structured information service to local neurologists for several months and studying the results to increase use of Society educational materials and promote chapter referrals.


To implement its plan for long-range growth, the Society launched a national Training and Resource Center (TRC) in Denver. It is expected that 225 people will participate in 21 programs during the TRC's first full year of operation... Continuing past successes, the 1991 Annual Professional Development Conference attracted 464 chapter and national staff who took part in 84 workshops.


"Lying down"is the one verb that seems not to appear in the vocabulary of our dedicated chapters and volunteers who together generated over 80% of the Society's 1991 gross income through fund raising events.

Thousands of supporters walked in the SUPER CITIES WALKs,[SM] cycled in the MS 150, read for the READaTHON[R], and voted in the Ugliest Bartender contest[R] to help fight multiple clerosis. In addition to these vital chapter-generated fund raising events, the seven-year-old Direct Mail program continued to show strong results with an 18% increase over FY '90, while the Leadership Circle initiative, designed to secure large individual gifts, proved to be a valuable newcomer. The fledgling Planned Giving program also registered early optimistic gains.

In an allied effort, our Marketing Division skillfully combined Society needs with those of such corporations as Seagram's, TWA, Continental, Pinch 15-Year-Old Scotch Whisky, Lipton, Heublein and Mercedes-Benz of North America to achieve mutually satisfying goals.

The spirited and heartwarming support extended to the Society by its individual, organizational and corporate friends helps make today easier and tomorrow brighter for people with MS and their families.

We thank all our supporters for their continuing generosity.


Nationwide income (combined public support and revenue before direct benefit costs of special events) in fiscal year 1991 was $94,964,245, up $2,390.891 or 2.6% from 1990.

With the exception of the direct mail program conducted by the National office, all undesignated monies received by the Society are allotted according to a standard formula: 60% is retained by the local chapters to support patient and community service programs and for professional and public education and supporting services; 40070 is assigned to the National office for research, research fellowship programs, patient and community service programs and supporting services. For the nationally conducted direct mail program, 60% is retained by National and 40% is distributed to chapters. All designated funds are used for the purpose specified by the donor. At the National Headquarters, total research expenditures in 1991 were $11,926,565, the highest level in the Society's history. Despite a sluggish economy, the Society's Board has budgeted $12,577,000 in 1992, a 5.5% increase.

The audited financial statements for the National office as well as the combined financial statements of the National office and chapters are included in the full Annual Report. The Society is a member of the National Health Council and maintains accounting policies in compliance with the Council's standards as well as the standards of the National Charities Information Bureau. We are proud of the fact that our fund raising and management expenses are well below those considered acceptable by these agencies. The Society's directors, officers and staff have striven to achieve the highest level of stewardship for the funds entrusted to the Society by the American public and are committed to do so in the future.

Arthur H. Siegel
COPYRIGHT 1992 National Multiple Sclerosis Society
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Copyright 1992, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

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Title Annotation:National Multiple Sclerosis Society
Author:Siegel, Arthur H.
Publication:Inside MS
Date:Jun 22, 1992
Previous Article:Ah, wilderness: on being renewed by the outdoors.
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