Excerpts from the 1990 annual report.

Report from the Chairman of the Board

Building on a decade of accomplishments in research, services and education, the Society was able in this first year of the nineties to focus on and advance toward important goals.

One of the Board's first acts of fiscal year '90 (October 1, 1989 to September 30, 1990) was to approve a significant addition to the Society's Mission Statement. The addition commits the Society to "develop and promote public policy to support individuals and families affected by multiple sclerosis."

This newly articulated mandate expresses our obligation to innovate, develop and pursue the passage of legislation and administrative regulations that meet specific needs of people with multiple sclerosis.

Another major commitment that will have long-range implications was approved by the Research Programs Advisory Committee of a special research initiative on genetic susceptibility factors in MS. This step will complement our very successful investigator-initiated research and fellowship programs. Over a three-year period up to $750,000 may be allocated to this program.

A new Society services initiative -- long-term care -- has been approved. Adequate support systems and financing -- particularly for young people with MS -- is one of the graver lacks in our health care system. A Long-Term Care National Committee has been organized consisting of national and chapter volunteers and staff experts from other key organizations. You will be hearing more about this program.

To improve the dissemination of information, a newly formed Information Research Center Advisory Committee held its first meeting early in 1990. Its purpose is to advise on and hone the flow of information from the Information Resource Center -- an outstanding Society resource of which we can all be proud.

Volunteer participation in Society activities remains one of our major pillars of strength, as evidenced in every aspect of our work. The energy and dedication of our volunteers were never more in evidence than at our 1990 National Leadership Conference (NLC) held in Minneapolis. We look forward to increased participation by our volunteers at our next NLC to be held in June of 1992 in Baltimore.

At the heart of this volunteer strength lies our National Board of Directors which continues to lead us with dedication, wisdom and foresight. I would like to take this opportunity on behalf of the Society to convey our condolences to the family of Richard S. Simmons who died in February of this year. As treasurer of the Society and chairman of our Finance Committee, Dick Simmons contributed greatly to our financial planning and fiscal soundness in recent years. He will be sorely missed.

In October, the National Board of Directors approved a budget of $108,500,000, our highest in history, calling for an increase in our expenditures in the fight against MS of some 20%. Such an ambitious undertaking express in tangible terms our confidence in the momentum of our Society and its ability to further our mission.

Report from the President and Chief Executive Officer

I count 1990 as a very healthy year for the National Multiple Sclerosis Society. We were able to implement a highly targeted series of MS-specific strategies and initiatives in all of our mandates.

We continued to strengthen the capabilities of our chapters -- the backbone of our organization. Enriched training meetings, of which our 1990 Professional Development Conference was a highlight, continued to augment the professional performance of chapter staff and enhance a warm and effective Nationa/Chapter partnership.

In recognition of the vital importance of strong chapter services, the National office budgeted subsidies to enable each chapter to have a full-time staff person responsible for services. By the end of 1990, we almost reached our goal: 96% of the chapters had service directors and they stand ready to implement two long-range services priorities begun in 1990: the establishment of a national long-term care priority and the development of Society programs to help children of parents with MS cope with the special pressures this disorder puts on a family.

To implement our growing advocacy program, we pioneered a training conference in Washington in late March. Thirty-five members from 22 chapters representing 17 states attended. We now have government relations committees in 60 chapters and a number of statewide coalitions.

Society participation in coalition groups, both nationally and locally, continues to grow, in full recognition that their strength is our strength. It is my hope that in my upcoming two-year tenure as president of the National Health Council, I can help to forge even stronger ties among us.

Our "Winners" campaign of public service advertisements (PSAs) was designed to emphasize the ability of people with MS to achieve mainstream goals of independence and productivity. It set before the public eight courageous stories, which have already sparked substantial editorial space and feature articles in major publications.

In total, we generated more than 450 million MS-related impressions in the media in 1990.

Increased membership access to information was facilitated by audio-taping INSIDE MS, our quarterly magazine. These taped magazines now go to approximately 2000 visually impaired readers.

For the first time, we targeted an area in which we wish to encourage research. We will not be able to assess the impact of this program for some time to come; however, we were able this year to evaluate the pilot research program -- initiated in 1987 to encourage novel ideas related to MS. Expenditure on this program, which supports over 100 pilot projects, now approaches $850,000 annually, 7% of the total research budget. One highlight: nearly 80% subsequently obtained full grants from the National Institutes of Health, the National Multiple Sclerosis Society or private foundations -- a major aim of the program.

We celebrate such growth with all our friends who made it possible through their generosity and dedication. With their help the Society was able to achieve a total gross income for the fiscal year beginning October 1, 1989 and ending September 30, 1990 of $92,573,354, a sound 18.2% increase over 1989.

We shall continue in 1991 to target our objectives carefully, selectively and with highly specific goals in mind. With the spirit and partnership so evident among volunteers and staff on both national and chapter levels, I am confident that we can look forward together to reaching those goals.

Research

The news is heartening. Information about multiple sclerosis is accelerating more rapidly than ever before. The holes are being filled, the pieces to the puzzle are falling into pace. As a result, MS problems are being specifically targeted, both in research being done by scientists and in programs the Society is sponsoring.

Below is an overview of three important developments in 1990.

Target: Specific Immune System 

Responses

1990 was a year in which, for the first time, scientists were able to "zero in" on the specific immune system problems associated with MS.

For many years, the most common idea about MS has been that it is a disease of immune system function -- an "autoimmune disease" -- in which immune cells called T-lymphocytes incorrectly attack the myelin insulation around nerve fibers in the brain and spinal cord. This results in inflammation, myelin destruction and scarring which prevents normal conduction of nerve signals and results in MS symptoms.

However, details of the specific nature of this response have been elusive.

In the last year, several research groups have moved us closer to an understanding of what the specific immune problem may be in MS. Scientists at Stanford University, Brigham and Women's Hospital in Boston and the National Institute of Neurological Disorders and Stroke at the National Institutes of Health gave tried to identify the specific T-cells which may be incorrectly targeting myeling in people with MS. If such cells can be identified we might be able to develop immune-regulating drugs which zero in on those cells only, leaving the rest of the immune system to function normally.

Evidence indicates that the number of T-cells targeting myeling in MS may be quite limited; people with MS may tend to use a restricted "repertoire" of T-cell types to mount an MS response. Although the degree of restriction remains a controvery among the various research groups working in this complex field, all agree that we have zeroed in on a more manageable target in looking for the specific MS immune problem.

Enough information has been gathered about the limited repertoire of T-cells in MS to encourage a group in Oregon to attempt to block the T-cell response in MS with a highly specific synthetic peptide in one group of patients. They will try this with a small number of volunteers whose T-cell usage in the disease has been very well studied and characterized. While this approach has been quite successful in treating MS-like disease in animals, peptide therapy of this sort has never been tried in humans, so these first experiences will determine if the approach is safe. It will likely be several years until we know if the strategy will be truly useful in MS.

Target: New Monitoring Techniques

for Clinical Trials

Clinical trials -- the complex and expensive experiments which must be done to demonstrate benefit and safety for any new treatment for MS -- are an essential part of the research interest of the NMSS and represent the final step in the path from basic research to disease therapy. One of the most frustrating aspects of clinical trials in MS is that it can take many years before the real benefit of any agent can be determined.

The Society has allocated $250,000 to support two research projects to determine if new methods of monitoring the clinical effect of a drug in the early stages of a trial might give us earlier clues to ultimate clinical benefit.

Two agents are being tested for benefits they may provide for people with chronic progressive disease: methotrexate and psoralen ultra-violet irradiation -- both immune system suppressive agents. In these clinical trials, we are exploring the use of frequent magnetic resonance imaging of brain lesions; frequent and sensitive testing for changes in cognitive function; and frequent sampling of urine. We hope to learn if one or more of these frequent and early monitoring techniques can predict the final outcome.

If these studies are successful, we may ultimately be able to speed the availability of new therapies to the MS population.

Target: MS Genetic Susceptibility

Recent revolutions in molecular biology have made the study of genetic susceptibility to MS an increasingly feasible and important area of research. Work over the past several years has told us that MS is not directly inherited, but does have a genetic predisposition; that the genetics of MS is very complex, with clearly more than one gene controlling susceptibility; that important genes which help to determine proper immune system function are relevant to MS; and that people with MS tend to show special characteristics of these genes more frequently than the healthy population.

We also know, however, that there are probably additional genes which control MS susceptibility.

Consequently, the Society has initiated a targeted research program in which we hope to award one or more significant research grants to systematically examine other genetic factors involved in MS. The Society has set aside $750,000 over three years and proposals to compete for these funds are being written by investigators as you read this Annual Report.

If we can understand the genetic factors in MS more completely, we may be able to help predict susceptibility, help determine risk and perhaps one day, help control this debilitating disorder.

Research Grants at a Glance

As of January 1, 1990, the number of active and committed research grants and various fellowships was raised from 180 in the previous year to 210. The number of active grants and future commitments to various fellowships as of January '91 increased to 214. During fiscal '90, 205 new or renewal applications were reviewed. Seventy-five were approved for funding. In addition, in 1990 the NMSS funded 29 pilot project awards for novel research in MS and 8 Health Services Research Awards.

Services

(Excerpted)

To work with families to achieve maximum independence, to open options that will help bring satisfaction and a sense of security into their lives: these stand as the primary objectives of the services arm of the National Multiple Sclerosis Society.

To achieve these overall aims with maximum effectiveness, the Society in fiscal '90 developed a series of highly specific, sharply focused initiatives.

Long-Term Care

That some day they may wake up with no way to manage extended care is a very real threat to people whose MS symptoms can vary so unpredictably over so long a time. To meet this basic need, the NMSS has launched a major long-term care campaign whose goal is to secure a comprehensive system of health and social care services for people with MS -- and for every American.

The foundation for this nationwide campaign has been firmly laid: of the Society's nationwide network of chapters through which all services are implemented, 26 have already taken steps to initiate some form of long-term care activity in their communities. Additionally, the Society has spearheaded the organization of a National Long-Term Care committee.

Children

Children of a parent with MS also often feel threatened by a "catastrophe" they frequently are not yet even able to pronounce let alone understand. To help them cope when MS strikes in the family, chapters are developing such innovative programs as family discovery weekends, summer picnic workshops, teen rap groups, "kids talk feelings" sessions, Saturday play groups and special monthly newsletters.

Audio Teleconferencing

A third focus of attention has been people who live in outer suburban and rural areas and have limited access to informational meetings and national medical experts. Fifty chapters and 202 sites were involved in a live annual audio teleconference, bringing Dr. Stephen Hauser, a genetics scientist, to 4,000 people.

Others for whom selective programs are being formulated include those wishing to enter or reenter employment, self-help groups, young singles with MS, the newly diagnosed, and even the small percentage of children who have MS.

Information

The dissemination of information through our nationwide network of chapters is a fundamental, ongoing element of the Society's mission. At the heart of our information system our network of chapters and the Information Resource Center (IRC) located in the National office.

This year the Information Resource Center received a total of 28,300 inquiries, at least 2/3 of them through the toll free information line -- 1-800-624-8236. Inquiries from people with MS or their families rose 5.8% this past year. Inquiries from physicians increased 60% -- an indication of the growing recognition the Information Resource Center is receiving from the professional world as a valuable and unique resource on multiple sclerosis.

The Society, in partnership with chapters, continued to strengthen delivery of all regularly provided local services in FY '90, including:

* Information and referral * Individual, group and family counseling * Educational and coping workshops * Assistance in obtaining medical equipment * Help in dealing with regulatory agencies * Self-help groups * Swim programs * Exercise classes * Brochures, newsletters and video tapes.

Public Education

(Excerpted)

George Gant, a chemist, uses a "scooter" but still manages to be on the job every day...Marilyn DuBois often needs to take two hours to thread a needle, but she will not permit anyone else to do this chore for her...Each of these people has multiple sclerosis...Each regards it as a personal mandate to lead a life governed by ability and not disability.

The Society too has a mandate: Through such courageous stories, to touch the hearts and minds of an ever-broadening public, adding insights to their lives that will move them to action.

Our award-winning series of public service announcements (PSAs), "Winners," is designed to do just that through its profiles of eight people with varying levels of disability. Initiated in the spring of '90, the series will have gone to approximately 7,000 print and broadcast outlets by the close of 1991.

In order to reach new audiences, the Society added a Spanish version to its mass radio and TV PSAs which have garnered over $2 million worth of complimentary air time. Hundreds upon thousands of walkers became acquainted with the Society from SUPER CITIES WALK[SM] PSAs. Car buffs were introduced to us through the Mercedes-Benz racing calendar. And general audiences learned about the triumphs and needs of people with MS through human interest and research-oriented articles which ran nationwide. All in all, more than 450 million highly targeted impressions were generated in the media last year.

PROJECT REMBRANDT,[R] the Society's biennial program of exhibitions by professional-caliber artists with MS, continues to capture the attention of widening segments of the cultural community. Plans have already been completed for the 1991 exhibit by artists with MS.

We shall continue our efforts to familiarize the public with MS and to enlist their support in overcoming this pernicious disease that costs so much in lost productivity, and can so cruelly impinge on the lives of at least a million Americans and their families.

Professional Education

(Excerpted)

In 1990, the Society underscored its commitment to a professional educational policy by creating a new staff position to develop and implement programs with and for professionals involved in MS health care: physicians, nurses, physical and occupational therapists and social workers, among others.

Long-range priorities include establishing a new Professional Speaker Placement Program in which MS specialists are being made available to speak at targeted national professional association meetings, undertaking collaborative educational efforts with other professional associations, and encouraging the frequency and sophistication of local professional education programs sponsored by our chapters.

Advocacy

Webster defins advocacy as a plea on behalf of another person. The Society regards advocacy as a mandate to shape and influence changes in public policy in ways that positively affect people with multiple sclerosis.

The year 1990 will be remembered throughout the Society as a milestone year because of the passage of the Americans with Disabilities Act and the strong nationwide visibility our members displayed in working with Congress to secure its passage. The voice of the Society is being heard as well in the contribution we are now making on MS-specific guidelines to those agencies developing the ADA's regulations to ensure that the special needs of people with multiple sclerosis are met.

Strengthening the advocacy effectiveness of our chapters to empower them for successful participation in policy change at the state level has also been a major focus. To this end, seven states with multiple chapters formed state coalitions. Additionally, the Society pioneered the first National Advocacy Training Conference in Washington, D.C. with our chapters, and developed the MS Advocate, as information exchange of chapter advocacy events. Two-thirds of our chapters now have volunteer government relations committees active in issues on the local, state and national levels.

We count our successes in the increasing involvement of Society members, volunteers and staff in advocacy. Our contributions can help bring about changed policies that will enhance the entire national community. We invite you to join us in our efforts.

Funding

(Excerpted)

From young readers to corporate leaders, our supporters are the force that provides the funds so essential to fulfilling our mission.

Chapter-based fund-raising campaigns generated over 90% of the Society's gross income. 1990 was the fifth consecutive year chapter fund raising goals have been surpassed, largely due to the rich and varied menu of events they offer in the community. The SUPER CITIES WALK[SM] continued to register impressive gains. The event, held by 80 chapters, raised $14,194,000, a 200% jump from FY '89. The MS 150 Bike Tour was up 24% over FY '89; the

DINNER OF CHAMPIONS[R] rose 9% and an energized Planned Giving Program showed a 12% gain.

Other traditional chapter favorites such as the UGLIEST BARTENDER CONTEST[R] and READaTHON[R] continued to draw while on the national level the Direct Mail program achieved a 33% growth.

The range of our support and the quality of our events has won the respect of the corporate world. Through cause-related marketing and special event sponsorships, our marketing division joins with leading companies in innovative partnerships which raise both funds and awareness. Among the companies with which we have enjoyed cooperative ventures in 1990: Pinch 15-Year-Old Scotch Whisky, TWA, Mercedes-Benz, Keebler, Newsweek, Miller Lite, Mattel, International House of Pancakes and Seagram's.

The solid and spirited partnership of chapters, national staff and volunteers makes us optimistic about the future. With your continued help we shall strive to fulfill our goals.

Report from the Treasurer

The financial support received by the Society in 1990 was outstanding. Nationwide income (combined public support and revenue before direct benefit costs of special events) was $92,573,354, up $14,242,552 or 18.2% from 1989.

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; 40% 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 1990 were $11,099,371, the highest level in the Society's history. In anticipation of continued strong financial support, the Society's Board has budgeted $13,100,000 in 1991, an 18% increase.

The audited financial statements for the National office as well as the combined financial statements of the National office and chapters have been prepared in accordance with the Standards of Accounting and Financial reporting for Voluntary Health and Welfare Organizations and with the Audit Guide published by the American Institute of Certified Public Accountants. 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.

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.