1987: a year of new dimensions.

Now: an 800 MS Information Line

"I need help." The voice was tearful, almost desperate. "I'm having more and more difficulty in getting around, but everyone discourages me from using any aids. They get angry if I try. I sense myself becoming very depressed. What can I do?"

That call came in on 1-800-624-8236, the Society's most recent addition to its service programs. A trained professional answered the phone and was able to reassure the caller that using an aid was not necessarily a sign of weakness or back-sliding. They spoke for ten minutes and the call was followed by a package of relevant information sent to the home.

Three weeks later, the Society received an emotional letter of thanks: "I now use Canadian crutches and a wheelchair part of the day. I feel liberated and alive again, thanks to you."

Close to 50 callers, some even more desperate, others simply hungry for information, dial the National office on this line every day, hundreds more if a piece of MS news breaks in the media. The line is staffed from 11:00 am to 6:00 pm (a taped line is in operation 24 hours a day), ready to provide reassurance and reliable, accurate information on every aspects of MS to all callers.

Services Are Flourishing

The toll-free 800 line is only one facet of a full network of services the Society provides to help people with MS in their daily lives.

They and their families need and want counselling, support from peers, assistance in finding equipment, respite through recreation, information about employment, advice about dealing with government agencies.

The delivery of these services is executed through a national-chapter volunteer-staff partnership which was reinforced this year through a restructuring of internal communication lines.

Services are flourishing and expanding.

An Enhanced Job Raising Program

This past year the Job Raising program enlarged its collaborative agreement with The Development Team, Inc., managers of the federally funded project, to include a demonstration project on social security work incentives. This special project will involve approximately 100 people with MS who are currently receiving Social Security Disability Insurance (SSDI) benefits but wish to test their capacity to return to employment. The pilot demonstration will begin in late 1988.

Added Resources in Literature

Almost 70% of the chapters have active MS lending libraries which are being enlarged by several important additions this year: "Research on Multiple Sclerosis," the Society's primer on research, has been rewritten and updated by Byron Waksman, M.D., vice president of research and medical programs, and Stephen Reingold, Ph.D., assistant vice president. A new "Facts & Issues" based on an article in INSIDE MS, the Society's official magazine, offers help in planning rehabilitation. And Sara and Lanny Perkins, attorneys and volunteers for the North Texas Chapter, have produced, with the help of the Society, a book called "MS: Your Legal Rights," designed to aid every person with MS become a more informed self-advocate.

Growing Alertness in Self-Advocacy

It is a rare person indeed who understands the intricacies of agency disability rules and regulations and knows how to go about protecting and assuring his or her rights. Yet the odds are that if you have MS sooner or later you will find it necessary to deal with at least one government agency.

While the Society is active as an advocate for individuals, providing help on a one-to-one basis as much as possible, it seeks constantly to enlarge the ranks of self advocates.

Action Alert was organized some three years ago to help establish an informed group of MS-related self-advocates. With some 4,000 members now enrolled, the program is strengthening its effectiveness by organizing government-relations committees at MS chapters throughout the country. Twenty-two chapters have already formed such committees.

Growing Strength in Group Advocacy

The emergence of an MS grass-roots movement already has affected legislation, most recently through the inclusion in the recently passed budget reconciliation bill of the Sikorski-inspired SSDI work incentives.

We will continue to press our cause in such pending bills as: * H.R 1442/S.550,

handicapped parking

legislation, which would require

all states to adopt

uniform laws recognizing

handicapped license

plates from other states. * H.R. 3666/S.1888,

universal voter registration act,

requiring all states to

provide mailing forms for

registering to vote.

Currently only 24 states

do so. * H.R. 3436, long-term

home care a bill that

would offer people with

disabilities and/or chronic

illness assistance in

obtaining long-term home

care.

We will also continue to identify MS-related needs and attempt to generate action concerning those needs. A current priority for the Society is to educate Congress and influence legislation dealing with nursing-home requirements, particularly as they pertain to a younger population.

Last October we were a vocal participant in Medical Research Day, a national awareness event held in Washington, D.C. in support of federal funding for medical research.

Actress Madlyn Rhue, who plays the ballistics expert on Houston Knights, and was the MS spokesman at the event, was interviewed by major press services and networks. At least 20 million people were reached by this courageous actress's eloquent words about her "toughest role."

Our Toughest Role: New Vistas in Visibility

The strength of our visibility was indicated in a recent public opinion survey. Nearly 90% of those surveyed expressed awareness of the Society as a health organization. Although the results were heartening, they also made clear the continuing need to provide the public with a steady stream of information about the disease and the Society.

Our mandate is to keep the stream flowing and to develop approaches to public education and visibility that not only tell our story but add something significant to the lives of those who read the story.

"Profiles In Courage"

In 1987, we developed an inspiring new series of six print ads which does exactly that. Called "Profiles In Courage," the ads encapsulated true case histories about the achievements of people with MS, and are designed to evoke, not the sympathy, but the admiration and respect of readers. We believe that in a broader sense these ads, one of which is featured on the cover, will contribute to a more positive public image of all people with disabilities. The series is currently being released.

Project Rembrandt

Project Rembrandt, which tells a story of ability within disability, last year reached a new level of public awareness when it held its first gala opening in the prestigious New York gallery of Vojtech Blau. Eight finalists were chosen from a group of 27 entries, all artists with MS. The mark of its growth can be measured in part by the number of entries for Project Rembandt '88: close to 150. This year the opening will be held June 27th a New York's well-known Fashion Institute of Technology. Academy Award winner Dustin Hoffman is honorary chairman and celebrities such as Anthony Quinn, Julie Andrews, Celeste Holm, Thomas Hoving, and J. Carter Brown have lent their names to this program. Project Rembrandt has the capacity to reach out to a whole group of people as yet unacquainted with the Society.

Students Against Multiple Sclerosis

SAMS also continues its campaign to open doors to a whole new group of people--the group that is in the most vulnerable age category for being diagnosed as having multiple sclerosis--the college students of America. Hundreds of students worked actively in SAMS while thousands of others became aware of what MS is, as the campaign gained momentum through such events as the national Rock Alike finals broadcast live from Daytona Beach on MTV: Music Television. The program drew 26,000 callers to vote for their favorite contestant.

All in all, SAMS programs were conducted on 172 campuses last year and, thanks to weatherman Willard Scott, the campaign launch was watched on the Today Show by six million viewers.

We Thank the Media

During 1987 the Society was able to reach the public regularly through the national media. Associated Press and United Press International, whose wire-service stories reached hundreds of millions of newspaper readers, carried a variety of features ranging from a human-interest article on the wedding of a couple who have MS atop Coney Island's famous ferris wheel to in-depth stories and reports on MS research progress.

Major metropolitan dailies such as The New York Times, New York Daily News, The Washington Post and Newsday as well as such national magazines as Good Housekeeping. People, Time, Fortune, and Business Week carried articles on MS. All three morning network TV shows plus CNN, INN and Fox had feature segments on people with MS. And more than 30 publications including Newsweek ran the Society's Mercedes-Benz calendar ads, not only placing our name before a combined circulation of 9 million readers, but helping us to raise money.

In 1987 we also developed celebrity public service advertisements featuring batting champ Wade Boggs and wrestling personality Captain Lou Albano. These PSAs togetherc with a group made either by Daniel J. Travanti, Angela Lansbury and Bob Newhart, among others, were broadcast by more than 300 television stations.

The Society is grateful for the cooperation of the media in helping the public understand what MS is all about, and why we need its support.

Funding Our Mission

Without the backing of a generous public and dedicated volunteers we would not be able to achieve our goals. Thousands upon thousands of individuals as well as corporate donors have worked with staff to underwrite, develop and carry out the fund-raising events that helped make 1987 a year of expanding dimensions in research and services.

Special People: Special Spirit: Special Events

Our volunteer are special. They bring new energies, ideas and lifestyles to the Society and turn them into important sources of revenue for our mission.

Yesterday's baby boomers have become today's young professionals, organizing events unique to their spirit: harbor cruises, gourmet evenings and bachelor classics are turning the 2-year-old Young Professionals Group into a booming "special events" fund raiser. It registered a 120% increase in FY '87, is now active in 28 chapters and has held a national meeting to brainstorm future activities.

Young, old and everyone in between seem to kindle a special spirit in the MS 150 Bike Tour. It remains the Society's fastest growing event, with over 30,000 cyclists riding in 90 tours to register a resounding $5 million plus income for fiscal '87. The Bike Tour is expected to be the Society's single largest fund-raising campaign in 1988.

Speciall thanks are due Olympic gold medalist Connie Carpenter-Phinney, the event's national chairperson, for the non-stop inspiration she provides and to Bill Liss of RJR Nabisco, Inc. Mr. Liss rode 150 miles through the Rockies to raise $30,000 for the Colorado Chapter.

With dinners held in every region of the country from New York to Los Angeles, the Dinners of Champions program remains strong as does ReadaThon and other special events of the Society. Bartenders deserve a special tilt of the cup for their efforts: they have raised more for the Soceity than any other profession--a record $27 million in just ten years.

The enthusiastic and innovative volunteer participation in event fund raisers is being matched by the magnanimity of donors in other areas of giving.

Growing--and Giving--in Other Directions

This past year the Society launched a major gifts campaign based in the chapters. It presents a unique opportunity for individual donors, corporations and foundations to help effect profound change in their own communities through substantial contributions to services and/or research as the need is seen locally. The program was initiated in four chapters in '87 and is expected to start yielding dividends in FY '88.

Already yielding dividends: the program of estate planning begun last year which offers a variety of ways of supporting our cause while reaping significant tax advantages for those that qualify. Gifts through bequests and legacies have been generous. The Society invites interested friends and supporter to investigate other long-range giving plans which can bring more immediate fulfillment to both the Society and the donor.

Short-range, the Direct Mail Program continuous to prosper, drawing in more than 55,000 new donors and raising over $2.5 million last year.

Research Development Fund Associates

The Research Development Fund Associates (RDF), initiated as a special program dedicated to raising funds solely for use in research grants and training fellowships, raised more than $1,300,000 in fiscalc '87, much of it the result of a generous outpouring of time and money by volunteers.

Mrs. Bruce Hagler, an indefatigable South Florida volunteer, raised $160,000 as a contribution to the Ronnie Eisenberg Research Fund, named in honor of her daughter who has MS. In just four years, Mrs. Hagler has raised more than half a million dollars for research by staging annual fashion-show luncheons.

Mr. and Mrs. Jimmy Wynne presented $187,000 to the Society for research as a result of the Yellow Rose Gala in Dallas which they chaired. Mr. and Mrs. Irving Moskovitz of New York chose to celebrate their 50th wedding anniversary by creating a special research fund at the Society. And former national Board Chairman Norman Cohn was honored by his friends with the establishment of the Norman Cohn Research Fund on the occasion of his 75th birthday --a fitting tribute to a giant of a volunteer who has given so freely of this time over the years to insure the continuance and growth of multiple sclerosis research investigation.

Highlights of Current Research

MS Susceptibility:

Several new findings reported last year seemed to crystallize the concept that MS is an autoimmune response to outside (perhaps viral) agents that attack vulnerable people.

Vulnerable is the key word. That MS susceptibility has a genetic component seemed clear from the results of a Canadian study led by Dr. Dessa Sadovnick of the University of British Columbia in Vancouver. At the MS clinic there, where comprehensive family histories and genetic profiles are done on each patient, she reviewed data on 815 unrelated MS patients and their 11,345 relatives going back three generations. She found that nearly 20% of the patients had at least one relative with MS.

Her analysis showed that a daughter of a woman with MS has a 50 times higher risk of getting the disease than the population at large. However, she stressed that the higher risk is still only 5%, or one in twenty.

The higher MS risk rate in families does not necessarily mean that the cause is genetic, said Dr. George Ebersc of University Hospital in London, Canada. Tuberculosis, he pointcs out, was once thought to be a genetic disease. To get at the root of the genetic question, he and other scientists including Dr. John Bell of John Radcliffe Hospital in Oxford, England, are dissecting various components of heredity and taking a hard look at them. Dr. Ebers believes that three or four genes, only some of which have been identified, may somehow combine to create a person's predisposition to MS.

Immunogentics:

Genetic findings do not, of course, rule out an immunological component to MS. Dr. Dale McFarlin of the National Institute of Neurological and Communicative Disorders and Stroke recently observed that to learn the reasons why the body's own immune system attacks myelin will require "a safari through the immunology of multiple sclerosis." His work focuses on T lymphocytes and the question of whether they contain receptors that react to myelin. If they do, such receptors might be the culprits responsible for demyelination.

Dr. McFarlin announced at the meeting of International Federation MS Societies that he had found in MS patients "a peculiar pattern of T-cell receptor genes," which he says needs "a great deal of study." He theorizes that several genes responsible for regulating the immune system may be defective in MS.

Physiological evidence of a relationship between stressful events and the immune system has come from the University of Chicago laboratory of grantee Barry Arnason. Studying MS patients' suppressor T cells, he found a threec-fold increase in norepinephrine receptors on them. This is significant because during stress, the body's sympatheticc nervous system releases the nerve transmitter nonrepinephrine, which binds to receptors on cells, causing a burst of activity. Norepinephrine causes smooth muscle cells to contract, blood vessels to constrict, and blood pressure to mount.

The fact that MS patients are making too many receptors to this transmitter means there is something wrong in the relationship between their nervous system and immune system. Dr. Arnason thinks there may be an inherited abnormality in these receptors.

Hypothalamic Role

Some inflammatory cells of MS lesions release substances called interleukin-1 and tumor necrosis factor. These agents act on the hypothalamus, which is a specialized part of the brain that governs fever, sleep and functions of the pituitary gland.

Dr. Anthony Reder at the University of Chicago, working on blood-level studies of various pituitary hormones in MS patients, found an abnormality in hypothalamic function in these people. This could, perhaps, explain some of the MS symptoms of fatigue and sexual dysfunction. It is also possible that MS plaques in the hypothalamus itself could contribute to these symptoms.

The AIDS Connection:

No disease in recent memory has caused such public alarm so rapidly as acquired immune deficiency syndrome. The disease is now seen as a general threat and research to fight it is being heavily funded by many governments. In the U.S. some clinicians and patients have feared that MS funding might suffer as a result. However, Dr. Richard Johnson of Johns Hopkins University, chairman of the Society's Medical Advisory Board, is convinced that AIDS research will, if anything, benefit MS research in the long run.

Like MS, AIDS can involve interruption of nerve signals with accompanying neurological symptoms. Both are though to begin from early environmental exposure to a virus and are characterized by delays between exposure and onset of disease.

However, AIDS is not MS. Big differences exist between the two diseases. Full-blown AIDS is fatal; MS is not. The AIDS virus has been identified; a virus involved with MS has not been pinpointed. AIDS is clearly infectious, with the paths of transmission well documented; MS is not.

A big unknown in AIDS is how the virus will affect the nervous system of survivors over a long period of time. Dr. Johnson thinks the study of viral interactions with the nervous system, other diseases that may develop, and the mechanisms that bring all this about will provide answers to some of the parallel problems of MS.

Exploring New Research Avenues

The Society's commitment to search for the cure and treatment of multiple sclerosis has been accelerated by the addition of four new categories of fellowships and awards: * Pilot projects in MS.

These projects reflect a

growing awareness that

certain avenues of

research are lacking in

the background data

traditionally needed for a

formal grant application.

The Society hopes the

seeded projects will prove

their value and qualify

later for a formal grant. * Advanced postdoctoral

fellowships, given to

postdoctoral fellows who

have finished one year of

training and wish to

continue research training

in MS. * Patient management

technology grants which

cover projects designed

to improve the quality of

life for people with MS.

Two grants approved last

year deal with methods

of treating spasticity and

urinary problems. * Established

investigatorships, geared to attracting

locally raised funds to

underwrite research in a

chapter area.

Such new avenues of research, added to our ongoing grants and fellowhips, may help to lead us one day to a future free of multiple sclerosis.

In Celebration

In the world of MS there are many, many heroes--people whose names don't necessarily make headlines or garner awards, but who live and act courageously every day. We salute them all for the quiet valor they display.

And there are others who through extraordinary or specialiezed deeds do come to public attention, and in doing so make a special contribution to the understanding of multiple sclerosis.

The National Multipled Sclerosis Society honors such special doers annually with a public recognition award.

An Overview of Grant Funding:

The Society spent $7,732,906 in fiscal '87 on research and research fellowships. As of January 1, 1987, the number of active and committed research grants and various fellowships was 161. The nuber of active grants and future commitments to various fellowships as of January '88 increased to 166. During fiscal '87, 137 new or renewal applications were reviewed. Sixty were approved for funding