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National Multiple Sclerosis Society 1988 Annual Report.

National Multiple Sclerosis Society

Report

from the

Chairman

of the

Board

As I commence my second year as chairman of the National Board, I can report to you that I find the Society in good shape financially, strong in spirit and working to capitalize on innovative programs in research, chapter services, public awareness and fund raising.

The strength of our distinguished National Board continues to grow. We have in place and continue to recruit top-level people with the experience to guide our Society in matters of finance, management and media. We have expanded our chapter representation on the National Board and Board committees: more chapter volunteer leaders now participate in the Board's governance process. Finally, we have expanded the opportunities for in-depth exchange of experience and ideas.

The significance of increased volunteer participation in Society affairs cannot be overestimated, for an active, informed Board lies at the heart of any success our Society achieves. This is as true at the chapter level as at the national level. That is why the response to the call to our June 1988 National Leadership Conference in Seattle was of such consequence: 91 of our 95 chapters were represented by their trustees at this conference, an impressive increase over the attendance four years ago in San Francisco, when only 33% of the chapters sent volunteers.

Their enthusiastic participation is an indication of the success we are achieving in developing a stronger partnership between the National office and chapters. Innovations such as the Chairman's Advisory Council, chapter chairman orientation meetings and, for the second year, regional meetings of our volunteer leadership have helped to increase communication, understanding and acceptance of Society programs and policies.

Building such a cohesive relationship was one of the primary objectives set forth by our Long Range Planning Committee. Another was to move forward in the seeking out, assembling and dissemination of reliable information and scientific opinion about multiple sclerosis.

It is gratifying to note the progress being made in this area. We are now able to provide more complete information to more people on a more timely basis. Our information Resource Center handled more than 24,000 requests the past year and, as part of ongoing efforts to improve the content and quality of all informational material, we are reviewing, editing, redesigning and updating our pamphlets, brochures and booklets.

A third source of assistance in carrying out our mission has been the contributions of outstanding scientists and physicians we are fortunate to have enlisted in the MS cause. Most recently, a council of professional advisory committee chairmen, called the PAC Council, has been formed.

While we are obviously pleased that we were able to exceed all Society goals set in FY'88, our work is cut out for us in FY'89: we must increase funding for research, strengthen and expand services for people with MS and their families, and continue to implement our plan to raise at least $100 million annually by 1992.

With your help we will achieve these immediate goals. And with your help we will advance steadily toward our ultimate goal: the total elimination of multiple sclerosis.

Report

from the

President

and Chief

Executive

Officer

Fiscal year 1988 completes a five-year period of strong development during which we achieved a series of short-range objectives and mapped out a blueprint for progress.

Nationwide income from all sources came in at $67,467,382, a very healthy 22.2% gain over last year. Campaign income from fund-raising events was $57,364,376, 16.3% more than '87. For comparison, recall our FY'84 figures: gross income, $37,500,000; campaign income, $32,500,000. We are truly on the move.

As a result, our total expenditures on research were a record $8,380,213; $647,307, or 8% more than last year. We expanded the scope of our research programs by funding two patient-management-technology studies and 25 pilot research programs. We look to exciting possibilities in both these areas.

Our toll-free information line (1-800-624-8236), showed a dramatic rise in calls. Just one and one-half years old, it responds to at least 2000 inquiries a month. A good part of this success can be attributed to a highly coordinated campaign to publicize the number by enlisting -- and gaining -- the support of the print and broadcast media.

1988 was marked by one of our most intensive and successful media efforts to increase public awareness about every aspect of multiple sclerosis. From our award-winning public-service announcements to the frequent radio and television interviews of our national campaign chairman, Daniel J. Travanti, we reached approximately 200 million people in the print and broadcast media.

Our cause is also becoming steadily more familiar to federal and state legislators through our expanding government relations work with chapters and in the halls of Congress. I testified before the House Labor/Health and Human Services Appropriations subcommittee urging support for a proposed medical rehabilitation center -- just one example of the Society's many-faceted, ongoing legislative agenda.

Few if any '88 accomplishments could have reached fruition were it not for loyal support from corporations, businesses and individuals endorsing and participating in such special projects as Students Against Multiple Sclerosis, and in such traditional fundraisers as Dinner of Champions, Ugliest Bartender and bike tours. I am particularly pleased to report that READaTHON, one of our oldest and best known programs, is again on the upswing.

Nor could we have achieved our goals without a consistently improving staff professionalism at both national and chapter levels. This year we completed our switch from a chapter support staff of generalists to one of specialists. Additionally, our All Chapters Evaluation System (ACES), created last year to improve all phases of chapter operations, completed a successful first year, evaluating 33 chapters.

The record is good, but we cannot and will not rest on laurels. Our blueprint for progress includes:

* A goal of increasing FY'89 campaign income by $10.6 million -- from $57.4 million to $68 million.

* Further development of the SUPER CITIES Walk, our new nationally coordinated event. We expect it to raise over $8 million in 1990.

* A one-million dollar budget increase for research grants in FY'89 which includes allocations for a program to test new monitoring techniques in clinical trials and a feasibility-grant program in health-services research.

* Most important, perhaps, a major push to augment the delivery of services to people who day in and day out live with multiple sclerosis. They deserve our best effort; we are determined to continue to give it.

MS

Services

Progress for a person with MS is measured in many ways. High on the list is, "How can I get through a day as productively and happily as I am able?"

Helping to answer that question is a prime function of the Society's services programs, coordinated from the national office and administered through its network of 162 chapters, branches and community councils.

Programs in the

Community

In FY'88 chapters provided a wide range of services to some 160,00 people with MS and their families, including:

* Swim therapy

* Exercise classes

* Educational and coping workshops

* Loans of equipment

* Help in dealing with regulatory agencies

* Information and referral is needed

* Family counseling

Virtually every chapter issues a newsletter regularly. Twenty chapters offer comprehensive job raising programs and there are 76 chapter-affiliated clinical facilities where people with MS can usually find a range of medical, rehabilitation and psychological services.

Some significant highlights:

* Support group programs for people newly diagnosed was the fastest growing service of 1988. Forty-percent more such programs were in operation this year than last, fulfilling a pressing need.

* Almost as rapid in growth were chapter-sponsored camp programs and discovery weekends offering an exciting exercise/respite care/relaxation/and counseling resource. Discovery weekends, in particular, are drawing whole families into learning situations that are fun-filled as well as instructive.

If a person with MS asks, "how can I better my day?" staff and volunteers involved in supplying services ask themselves, "How can we improve our delivery of services?"

In FY'88, continuing into '89, a series of programs and projects has been designed to provide answers.

* We have initiated a grant-search program to secure private and public funding for expansion of services.

* A professional peer consulation staff is available within each geographic area to assist and support chapter service staff.

* A major project is under way to collect and study innovative service programs of other voluntary health organizations to assist in long-term planning.

* Teleconferencing between medical experts and chapters has been expanded. Over 200 locations in the United States and Canada have already been established to carry a Spring '89 program.

The continuing expansion of all multiple sclerosis programs and their effective delivery is one of the Society's highest priorities. We shall continue to strive to attain these objectives.

Information

Chapters are mandated to provide five core services (education, advocacy, loan equipment, counseling and information and referral). Information is perhaps the most basic, information springs knowledge; from knowledge, understanding; and, eventually, the capacity to act.

The Society's Information Resource Center (IRC), developed over the past two years, houses an extensive library of books and pamphlets in a computerized, centralized location which enables it to dispense information more comprehensively and speedily than ever before. It serves not only all our chapter and national staff, but the public, professionals, and the medical and research information services of our federal agencies as well.

Just 18 months ago a nationwide toll free information line was added: 1-800-624-8236. Reassurance through information is now just a phone call away for thousands upon thousands of people. And thousands upon thousands are using it, particularly when an MS story breaks in the media or a new Society publication reaches our membership. The graph on the left indicates the relationship between media placement and the rise in inquiries. (Note the response our own Annual Report elicits!) To handle this overgrowing demand, the expanded staff includes three librarians, a registered nurse and a certified social worker.

With a projection of 36,000 inquiries in '89, the IRC continues to build its information capacities and the staff continues to fine-tune its capabilities to assure a steady and swift flow of information.

Research

Genetics advances in 1988 appeared to narrow the field of people who could be targets for multiple sclerosis. Scientists found that certain gene combinations heightened a person's risk of developing the disease, although an environmental trigger, such as a virus, is still considered a major factor.

A collaborative study by a West Coast team and investigators from the National Institute of Neurological Disorders and Stroke focused on T-cell receptor genes of the immune system and the DR2 antigen. (Antigens are substances that the body regards as foreign and against which it produces antibodies. The HLA system is a group of antigens responsible for histocompatibility, that is, the acceptance or rejection of tissue transplants. DR2 is a marker, one of many such hereditary markers found in the HLA system.)

Earlier studies has shown that most people with MS (and some healthy people) have high levels of DR2 antigen in their tissues. But the new report revealted that people with both DR2 and the appropriate T-cell receptor genes have a more than three-fold risk of developing MS.

The new finding may point to future methods of treatment that would suppress the immune reaction believed to be a component of the disease, Dr. Dale McFarlin at NINDS noted. He told a New York Times reporter that he considered the work "a step in the process of understanding multiple sclerosis... (but) by no means a solution."

Another gene project at the University of Oslo uncovered a startling correlation between MS and an HLA marker called DQw1. Dr. Frode Vartdal, a neurologist studying blood samples from 61 Norwegians with MS, found that 59 of them were positive for DQw1. He also found the same marker in seven out of 10 healthy Norwegians, so he now plans to look at other ethnic groups that have a lower prevalence of the disease.

Virus Tracings

On the vital front, new evidence that MS may be linked to a retrovirus, HTLV-1, (human T-cell lymphotropic virus) came from laboratories at the National Cancer Institute and the Wistar Institute of Anatomy and Biology in Philadelphia. Using an extremely powerful technique called the polumerase chain reaction, scientists at the two centers found traces of genetic material similar to that of the retrovirus in two different series of MS patients. In one instance, Dr. Premkumar Reddy of Wistar found genetic mateiral almost identical to that of the virus in all of six people with MS but in just one of 20 people without the disorder. But when Dr. Stephen Greenberg at the cancer institute applied the same technology to blood samples from a group of 21 MS patients and 35 healthy people, he found evidence of the genetic sequences in only 6 of the 21 patients. Experts feel that the connection of HTLV-1 to MS must still be proved.

Therapeutic

Advances

Some clinical trials, completed in 1988, offered mixed results. The most promising work came from New Jersey Medical School, where Dr. Stuart Cook and colleagues treated patients with total lymhoid irradiation (TLI), or X-irradiation of the body's lymph nodes, a major site of lymphocyte (immune cell) aggregation. The clinician gave TLI to 27 patients with chronic progressive MS, and sham "irradiation" to 21 controls. He found that the disease in two out of three TLI-treated patients was stabilized, in some for as long as four years. Those given sham treatment continued to deteriorate. A corollary finding was that those patients did best whose blood lymphocyte count stayed below a certain critical level. Dr. Cook plans further trials to confirm this work.

A large three-year multicenter trial of cyclosporine, an immunosuppressive drug widely used to prevent rejection of transplants, yielded disappointing results. Among 547 chronic progressive patients treated with cyclosporine or placebo, both groups continued to worsen, though the treated group deteriorated more slowly. The drug's sever side effects, including kidney toxicity and hypertension, relegate it to investigational use for the indefinite future, in the view of the Society's Medical Advisory Board.

Some investigators are pinning their hopes on beta interferon, a substance made by the body to combat viruses. Dr. Kenneth Johnson of the University of Maryland is heading a 10-center trial of 350 patients, who will give themselves subcutaneous doses of beta interferon or placebo for two years. Immunologic studies will be done on all patients during the trial, which is expected to finish around summer of 1991.

Clinical trials apart, some chronic progressive MS patients may stabilize spontaneously, according to Dr. Aaron Miller of Downstate (N.Y.) Medical Center. His group followed 145 patients, examining them every three months for a year. About 20% of them did not change symptomatically. He believes a good percentage of chronic progressive MS patients tend to stabilize, at least temporarily, though which ones will do so is unpredictable. Such remissions must be taken into account in planning clinical trials, he says.

Increasing numbers of scientists are enlisting themselves in the worldwide battle to eliminate multiple sclerosis. Their input, and the unremitting efforts of those who have worked long and hard on this difficult problem, will inevitably lead to a solution.

Public Education

Granted the words "multiple sclerosis" trip off the public's tongue more readily today than five years ago. This increased recognition, however, only calls attention to the need for an even greater visibility effort that not only fosters a passing awareness, but touches deeply enough to activate those reached.

The enthisiastic reception to our "Profiles in Courage" series of print ads indicates we're achieving increasing success in this endeavor. Conceived in our last fiscal year and implemented in FY'88, this unique public service campaign tells the stories of seven individuals who despite having MS continue to excel in their own fields and inspire others.

In addition to appearances of full-page ads in virtually every major national magazine, the campaign was editorially featured in a broad range of publications including the Daily News, the Los Angeles Times, Management Review, The Globe and the New York Post, as well as by Associated Press, Reuters and United Press International. This fall, "Profiles In Courage" posters also traveled the New York Transit system, reaching subway riders and passengers in 5000 buses. Phone calls to our Information Center increased as a direct result by about 20%. TV and radio PSAs are currently being released.

Additionally, stories, articles and interviews in national outlets have featured:

* Patricia Hardesty, coach/referee and winner of our National MS Achievement Award;

* Shelli Breed and Daniel L. Towslee, MS Mother and Father of the Year who were honored by the President in Washington, DC;

* Actor Daniel J. Travanti, Society national campaign chairman whose brother has MS;

* And Project Rembrandt which, through its annual exhibit of professional caliber artists who have MS, further illustrates that disability is not synonymous with inability.

These stories and broadcasts acquainted millions of Americans with the courage of individuals getting on with their lives despite disability.

Our own magazine, INSIDE MS, regularly reaches close to 400,000 readers with though-provoking articles, many of them inspired by the active correspondence the magazine generates.

On the science front, two new studies, one looking at retroviruses and the other at genetics have afforded the opportunity to broaden community insights into the complexities of MS and the intensity of the research efforts to conquer it. Major stories appeared in The New York Times, AP and UPI. In addition, features on various MS science-related issues appeared in such publications as the Medical Tribune, USA Today, and Science News.

Community communication takes many forms. The Society was pleased to be able to help rekindle interest in the importance of good manners through its "Thank You Week" campaign inaugurated this fall. We expressed our gratitude to nearly 100,000 individuals for their consistent dedication to our mission. Print support for the campaign ran in some of the nation's most popular magazines, including Glamour, Vogue, Ladies Home Journal, Family Circle, National Geographic, Ad Week and Ad Age.

All in all, we reached an estimated 200 million people this year with news about MS.

We are deeply thankful to the media and are cognizant of our responsibility to keep earning this support. We pledge to continue fulfilling our mandate to inform, educate and activate.

Government Relations

Through its government relations program, the Society stands ready to educate, activate and advocate at every legislative and regulatory level. Our chapters in particular have become more articulate advocates each year with the growth of this program. Government Relations Committees have been organized now in 28 chapters. There are now also a significant 5,000 individuals enrolled in Action Alert, ready to rally around legislative issues as they arise.

We have been effective: the Civil Rights Restoration Act and the Fair Housing Act -- two landmark legislative victories for people with disabilities -- a new law requiring the Department of Transportation to develop a uniform handicapped parking regulation has been enacted.

The Society was also active in the drafting and introduction of the Americans with Disabilities Act, the most important piece of civil rights legislation for people with disabilities since the Rehabilitation Act of 1973. This bill is a top agenda item for '89.

This has been a successful year in other respects as well. We have testified in Congress on the need for funding the National Institutes of Health, on the problems in the Social Security disability programs, and on the need to make new technologies available to people with disabilities. On the latter issue, our suggestions were incorporated into the legislation passed in October.

We have also taken increasing leadership roles within coalitions: last spring we sponsored a National Health Council meeting in Washington, DC at which Senator John Chafee (R-RI) was the speaker, and the Society directed the activities surrounding National Medical Research Day in 1988, at which National Campaign Chairman Daniel J. Travanti made a dramatic appeal for funding of biomedical research.

Along with the Americans with Disabilities Act, other federal issues priorities for 1989 include support for:

* A National Medical Rehabilitation Research Center;

* The Social Security Work Incentive Act which would create a permanent disability status and eliminate the trial work period;

* Family and Medical Leave Act;

* Expeditious drug review by the FDA.

With the continued growth of an educated and active group of MS advocates, we look forward to many more advances on the legislative front.

Professional Education

Exchange of information and experiences among professionals is another indispensable side of the "education coin."

* Within our own organization, our fift annual Professional Development Conference for chapter and national staff attracted a record-breaking number of attendees: 325 staff from 90 chapters. The conference curriculum included 80 workshops on services, research developments, fund-raising, public education and general management.

* Society participation in scientific workshops was significant.

A working group in cognitive function met to explore problems and new developments in assessment, prediction and management.

The American Academy of Neuroloty spring meeting was the site of the first "MS Issues Forum," developed by the Society. Approximately 150 neurologists heard about doctor-patient relationships, cognitive and emotional disorders in MS, use of magnetic imaging in MS and clinical trials.

In a fall meeting, the first of its kind since 1982, some 110 scientists and observers from around the world met on Jekyll Island, Georgia, to review latest results of clinical trials, techniques for monitoring MS, and new ways to approach therapy.

And, in another workshop held in Canada, some 75 scientists dealt with the problem of how nerve impulses are conducted in the central nervous system and "sabotaged" in MS.

* Among Society publication highlights were the printing of a second edition of Therapeutic Claims in Multiple Sclerosis and an updated revised Research in Multiple Sclerosis. A new newsletter, "MS Exchange," developed as a joint venture of the Society and the Consortium of MS Centers, is being distributed to allied health professionals.

We are proud to be part of a professional community so willing to share and grow together.

Funding

Our

Mission

Traditional events enhanced by new programs and a growing diversity of approaches have enabled the Society to record an unprecented year in funding our mission. Campaign income rose $8 million to $57,364,376, scoring the largest annual dollar increase in our history.

Newest among our fund raisers is the SUPER CITIES Walk. Excitement, expectation and preparation have run high as we enter into a "first:" a single national event to occur across the whole country at the same time. Forty-two cities were in this pilot effort which took place in April, raising over $4 million. The projection for '90 is 90 cities and the doubling of this year's income.

One of the fastest growing of our established events has been the MS 150 Bike Tour, a chapter magnet for thousands of enthusiastic volunteers, athletes and families out for a weekend of healthy fun. It registered a phenomenal 81% increase over 1987, raising $9.2 million. The Dinner of Champions remains a steady favorite, offering communities the opportunity to honor one of their own and bartenders maintain their dedication to our cause through their efforts in the Ugliest Bartender Contest.

It is with a real sense of satisfaction we report that READaTHON, the Society's pioneer event, is coming back into it own, after having leveled off for a number of years. It has shown a 5% increase, a welcome trend, because the benefits of encouraging children to read go beyond a single charitable organization's welfare.

In areas other than special events:

* Our Direct Mail Program continues to break its own records. Gross income increased in FY'88 from $2,500,000 to $3,120,000.

* Early results of our new major gifts program show $1 million in pledges in four pilot chapters. Currently, 19 chapters are developing the program which promises to show dynamic progress in '89.

* Our expanding marketing program offers corporations an opportunity to support Society projects in creative efforts beneficial to both groups. For instance, Canada Dry is the national sponsor of the SUPER CITIES Walk while Keebler and Tetley are product sponsors; Maxell Tape, Maxwell House Coffee and the Games Gang, makers of Pictionary, Balderdash and Gender Bender, sponsor Students Against Multiple Sclerosis; Dollar Dry Dock offers an MS Mastercard program; Miller Beer helps give the Ugliest Bartender Contest a fresh look by promoting fund raising materials; and Strohs White Mountain Cooler Comedy Tour presented a check to the local Society chapter each time it performed in a town.

* Students Against Multiple Sclerosis (SAMS) continues to attract attention with such events as the live MTV broadcast of the Rock Alike finals and School's Out Weekend. Over 200 campuses (kudos to winning school, University of Missouri) participated in this year's program. This kind of enthusiasm will enable us to reach a gross income of $500,000 by the end of FY'89.

We are grateful to each and every individual, corporation and business firm that has helped in one way or another to make '88 a banner year.

But research requires additional funding. We need to develop more caregiver programs, expand counseling groups, intensity employment preparation efforts for people with MS. And more of the public must be reached with our message.

Our blueprint for '89? To increase our campaign income to $68 million to help achieve these goals. We invite you to join us in our efforts.
COPYRIGHT 1989 National Multiple Sclerosis Society
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1989, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

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Publication:Inside MS
Date:Mar 22, 1989
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