It was cold the first time the small group met with an Easter Seals representative to start a post-polio organization. Easter Seals had chosen the Eliot Church in Newton as the site for the meeting and Thursday evening, December 5, 1985 as the time. They had also chosen the program, a slide show on what was then known about post-polio. The pessimism expressed by medical experts in that slide show was more chilling than the temperature to the three people who made up the audience: Elaine Burns, Joel Samuels and Paula Brown.
Elaine was there because she had contacted Easter Seals to ask if they were sponsoring a post-polio group here, as she had learned from a friend that they were doing in California. Elaine had called Joel after reading an article by him describing his experience in St. Louis at a Gazette International Networking Institute (G.I.N.I.) conference on polio and post-polio. Paula had called Easter Seals after reading about post-polio in the magazine section of the New York Times, which mentioned that Easter Seals was involved in establishing support groups for post-polio individuals. All three were experiencing symptoms which they later learned were classified as relating to post-polio syndrome.
Despite the negative aspects of that first meeting, another meeting was scheduled for January, 1986. At that meeting Elaine, Joel and Paula talked of reaching the polio community by searching out mailing lists of Massachusetts polio people from such sources as Rancho Los Amigos and the Massachusetts General Hospital (MGH), and efforts were begun in that direction. At the same time, Easter Seals asked if Elaine and Paula would appear on their Channel 25 telethon on March 9. That appearance was so brief that they had little time to present most of what they had prepared, but it did bring responses from several interested people.
The group began to meet monthly and each meeting brought new people. Easter Seals was still involved, but the members were beginning to chafe at the restrictions imposed by a dependent relationship with Easter Seals. They wanted to plan their own meetings, control the budget and, most importantly, to publicize the group in order to bring the message of post-polio syndrome to as many people as possible. They asked to meet with administrative personnel of Easter Seals in order to define a mutually satisfactory relationship, but found that the two groups were at cross purposes. Therefore it was determined that the group should become an independent organization.
In August, 1986 a steering committee was formed as a first step toward a formal organization. Easter Seals generously provided us with a one-time grant of $1,000, which was greatly appreciated. The March of Dimes offered to contribute the use of photocopy and postage equipment as well as office supplies, and to cover the mailing costs of newsletters and information packets. The first steering committee meeting took place in September, 1986 with Elaine Burns, Fred Bowers, Joel Samuels, Pat Prell, Maryann O'Toole, Mary Lee and Paula Brown attending, and they began to plan activities.
By November, 1986 a letter from Easter Seals confirmed that the relationship with them was ended. We were on our own and began to put into practice our determination to reach out to the polio community, first with a poster which was hung in as many public places as could be found, and then by a newsletter run off at the March of Dimes office. By February of 1987 there were 61 members.
Attention then turned to the medical needs of the polio community. There were not only no post-polio clinics, there were very few doctors who were aware of post-polio as a discrete diagnosis. Dr. Robert Brown, a neurologist at MGH, was interested in the late effects of polio and offered to be a liaison person between MGH, the Spaulding Rehabilitation Hospital and our group to initiate plans for a clinic for polio and post-polio patients. With his help, a proposal was submitted to Spaulding for a clinic operated by a team of personnel including a physiatrist, a neurologist, a physical therapist, an occupational therapist, an orthotics specialist and a psychotherapist. Our proposal to Spaulding was approved, and they announced that a post-polio clinic would open on June 1 and would be available intially for one half-day a month. Requests for appointments came pouring in. Demand grew so rapidly that more clinic time was made available, and there was a long list of people waiting to be seen.
Meanwhile, the Association's monthly meetings were attracting more new people. The focus of meetings was kept on the medical and psychological aspects of post-polio syndrome with lecturers such as Dr. Robert Brown; Dr. Richard Rosenwald, a psychiatrist; Dottie and Louis Sternburg, who had written a book about his life with polio; Dr. Theodore Munsat, a researcher at New England Medical Center; and Dr, Francis Curran, a pulmonologist. We also were interested in what alternative medicine might offer and so asked a chiropractor, an acupuncturist, a Feldenkrais specialist and others to speak.
The Association became a non-profit corporation in the fall of 1987, and a Board of Directors as well as officers were elected. Tax exempt status was approved by the IRS in October, 1988. An Honorary Board of Directors was also formed, and a number of doctors as well as the administrator of the March of Dimes agreed to serve in honorary capacities.
It was learned that between 1946 and 1956 - a ten year span - 10,000 cases of polio had been reported to the Massachusetts Department of Public Health. With so many people to reach, efforts to publicize our presence increased. In the fall of 1987 we began to offer small support groups to people who were new to our organization. These were time-limited groups which were intended to establish a network of support within the larger organization. By-Laws were approved in October of 1987, and the group celebrated with a a holiday party for Gini Laurie, founder of the International Polio Network. That fall an audiotape library was started, a bookkeeping system was set up and the Board of Directors was increased to nine. It was found that it was practical to have Community Workshops prepare, fold, staple, sort by zip code and send out the newsletters. This bypassed the physically taxing facilities of the March of Dimes office where Elaine had labored, mostly on her own.
New to the Board of Directors were Jim Dougan, who agreed to be librarian; Fred Pearson, who took charge of researching, copying and sending out information packets to consumers and medical people; and Ruby Hayes, who has since moved out of the area.
In May of 1988 the group sponsored its first conference, which took place at the Holiday Inn in Dedham with Dr, Frederick Maynard, of Minnesota, as the featured speaker. This conference attracted a large number of people and established a pattern for the future. An occasional conference or seminar would bring whatever information was available on post-polio to the largest audience.
In 1988 the first brochures describing the objectives, activities and services of the Association were printed, and have gone through several revisions since then. A new post-polio poster was designed by Fred Pearson and went up wherever poster space could be found. As the mailing list grew from these efforts, John Kespert offered to coordinate the list with the aid of his computer, a task later assumed by Bill Hoyt. Jim Adamo became coordinator of the library of audio tapes which consists of tapes of meetings, presentations at conferences and other information which would be helpful to the membership. The Association also received a sales tax exemption from the Commonwealth of Massachusetts.
In late 1988 Elaine and Paula made contact with Dr. Steven Moskowitz, a physiatrist at New England Rehabilitation Hospital in Woburn. He was very interested in our group, and proposed offering a mini-seminar at the hospital in March, 1989. Dr, Moskowitz lectured and other members of the Rhab staff made presentations to 65 people in attendance - the largest number their facilities could seat, although many more were interested in attending.
Monthly meetings continued with speakers such as Dr. Frederick Mansfield, an orthopedist at MGH; a physical therapist; a travel agent specializing in travel for the disabled; and a panel of members discussing how they had changed their lifestyles to accomodate new physical problems. The mailing list now numbered 550. In June of 1989, Paula appeared on the Good Day show with Dr. Brown to talk about post-polio syndrome with Elaine Prost, who interviewed them.
In January of 1990, New England Rehab began to offer a post-polio clinic. Their interest in our group continued and they planned another seminar in March, 1990 entitled "Post-Polio Syndrome: Treatment Options." Dr. Moskowitz gave an overview of the syndrome and the support staff described some of the possible treatment programs. In 1991 Jean Dietz, a writer on health issues for the Boston Globe, wrote an article on post-polio for her weekly column. She also wrote about the important role the GBPPA played. That article elicited over 60 requests for information.
In-the spring of 1991, Fred Pearson published the first issue of TRIUMPH, a four-page newsletter. The new format contained much useful information, including a question-and-answer column written by Dr. Moskowitz. It offered an opportunity for all members, mobile or not, to be part of the organization and to participate in it. TRIUMPH has indeed been a triumph for us all!
In 1992 the Association established a financial assistance fund which makes grants to members of limited means to purchase needed assistive equipment or to help pay for healthcare services.
1994 was a busy year for the Association. A telephone network was established for members interested in maintaining contact with each other. A resource list of services and healthcare personnel familiar with postpolio syndrome was published. A voice mail telephone line was established for members or others requesting literature or information, and also for making suggestions. The maintenance of membership records was split off from the treasurer's responsibilities and entrusted to the vice president in order to reduce the treasurer's work load.
The next year saw a listing for the Association in the telephone yellow pages. After many years of conscientious service to the organization, Fred Pearson retired as vice president in 1996 and as editor of TRIUMPH in 1997. Betty Anderson was elected vice president in his place, and Elaine Burns assumed his duties as editor of the newsletter. In October, 1997, Dr. Lauro Halstead, Director of the Post-Polio Program at the National Rehabilitation Hospital in Washington, D.C. attended a conference in Cambridge. Pat Prell, one of our members, convinced him to delay his return flight to Washington in order to speak to our group. Dr. Halstead is a leading figure in the field of post-polio syndrome research, and his talk was very well received.
The Association also provides partial sponsorship of members to attend regional or national seminars, and these members then share their experiences via the TRIUMPH newsletter. Recently, the Newton Girl Scouts have volunteered to help out at meetings by purchasing refreshments with funds provided by the Association, and then setting up the tables and returning to clean up afterwards, which is greatly appreciated.
And what of the three founding members? Joel Samuels retired as treasurer in 1997, but remained on the TRIUMPH editorial board and was also elected to the Honorary Board of Directors. Paula Brown retired from the Board in 1996 and became a member of the Honorary Board of Directors. Elaine Burns has been president since the Association was incorporated in 1987, is the de facto editor of TRIUMPH and also is involved in every aspect of the organization's activities.
Outreach activities have continued with efforts concentrated on the publishing of TRIUMPH, now a six page newsletter, as well as regular meetings and occasional seminars. In addition, there are posters available as well as information packets for healthcare professionals, Association members and the general public, together with a list of vendors and installers of adaptive and assistive equipment. There is also a library of useful articles together with videotapes instead of audiotapes of selected meetings and seminars.
The Association has sponsored conferences over the years. In addition to the 1988 seminars mentioned earlier, there were two conferences in the fall of 1993, in Danvers and Framingham, co-sponsored by GBPPA and New England Rehabilitation Hospital. In 1994 there was a conference in Woburn, co-sponsored also by New England Rehabilitation. In addition, in October, 1994, a conference was held at the Fairlawn Rehabilitation Center in Worcester, co-sponsored by New England Rehabilitation Hospital and Fairlawn Rehabilitation, featuring Dr. Steven Moskowitz and Dr. Daniel Tannenbaum as speakers. In November, 2000, the Association put on a conference at the Holiday Inn in Newton with guest speakers Richard Bruno and Nancy Frick. Both are well known as researchers and authors in the field of post-polio syndrome, and it was an excellent opportunity to see them in person.
In 2000 also, an internet website has been established which will eventually contain a brief history of the organization, articles, meeting information, links, resource lists and more.
Much has been accomplished, but more remains to be done. We are confident that the Association will continue to grow and to fulfill its mission of providing support to its members as well as disseminating information about post-polio syndrome to all.