A History of the Foundation

1990-2000, A decade of caring, by Joanne Armstrong

As with most patient advocacy groups the organization started with the courage, vision, enthusiasm and determination of just one person. That person was David Saks of Baltimore, Maryland, who found my name, the only other one in Baltimore, on the list of PSP patients and family members from around the nation who had written to the National Organization of Rare Disorders for information about the disorder, and who, in addition, said they would be willing to correspond and share information with other families. Both David’s wife and my father had been diagnosed with PSP. David’s August 1, 1990, letter to the other thirty- six names on NORD’s list asked “Shall we continue to wait for things to happen or shall we get together to make them happen?” On September 5, 1990, his letter to the respondents announced that ten patients or family members indicated a desire to form an organization. The Society for PSP was launched! We organized as a membership organization and asked for an initial $15.00 membership fee and $15.00 annual dues. “If any of you find these amounts a hardship, send what you can… If any of you can afford to, please send more.”

It would be well into the first year of operation before the fee structure would cover a portion of the start up expenses of stationery, postage, duplication, telephone fees, legal and other fees to incorporate, register, and get a designation as a 501(c)3 nonprofit organization. We were a truly national organization thanks to the giving nature of our first officers: David Saks, Executive Director, Maryland, Joanne Armstrong, President, Maryland, Mary Anne Memminger, Vice President, Hawaii, Reba Saks, Secretary, Maryland and Pat Enright, Treasurer, Illinois. Mary Anne financed the mailing of our first newsletter in May, 1991, which went to 100 plus addresses. This followed a series of 5 letters to the membership from David Saks. Pat served valiantly for three years as our first treasurer, quite a feat to handle long distance from Baltimore!

Paula Frakes, an employee of Hoffman-La Roche, successfully gained time and funding from her employer to plan and execute our first professionally printed newsletter, a four-page folded self-mailer. By November, 1990, Dr. Stephen Reich, of Johns Hopkins University Hospital had agreed to serve as Chairman of the Board and Dr. Lawrence Golbe of Robert Wood Johnson Medical School had agreed to assemble a Medical Advisory Board. Meetings in November 1990 and February 1991 with Dr. Murray Goldstein, Director of the National institutes of Neurological Disorders and Stroke, and other top scientists at that institution propelled not only the visibility of the organization but initiated our request for research funding.

As the organization’s membership grew David, Reba, and I each dealt with health issues that restricted our attention to the organization. We were all saddened when Reba lost her battle with PSP in April, 1993. David’s health was also in decline, but he worked courageously for the Society every waking moment, even during months when he was confined to his bed, until his death in September, 1995.

Thanks to many others who volunteered their time, skills and financial resources facilitating the organization to remain focused on its mission. Dick Janney’s business copy machine duplicated early newsletters, forms and the first version of Dr. Golbe’s informational “PSP: Some Answers.” Dick was the chauffeur for many trips to Washington for meeting with legislators, and meetings at the NIH. Walter Welch in Florida built a data base of the membership and provided labels for mailings. Bill Williams of New York solicited funding from drug corporations. Beth Ness, later Beth Carveth, of Nebraska took on many of the organizational tasks from David Saks in the year and a half before David’s death in 1995. Laura Purcell, now Laura Purcell-Verdun and Paula Goldberg, both on the staff of Hopkins, volunteered many hours to develop patient services for SPSP members by speaking with patients, planning symposia and writing informational booklets. Dr. David Zee of Johns Hopkins was an early advisor and advocate. Nancy Brittingham volunteered to become the newsletter editor in 1994, a growing responsibility which became a paid position for her in 1999. Thanks to these persons and countless other volunteers, we were able to accomplish the following in the years 1990 – 1995. Each of these activities broadened our visibility.

1990 – National Parkinson’s organizations and five neurology journals announce the formation of the Society – SPSP works toward gaining space for the discussion of PSP on the main agenda of the 1992 Second International Congress on Movement Disorders. SPSP urges the NIH to announce Request for Proposals for research on PSP. Our membership numbers more than 30 by the end of the year!

1991 – May 18, SPSP’s first Symposium for Patients, Families and Caregivers is held at Johns Hopkins Neurology Clinic. 12:30 PM-3:30 PM. Fifty two persons attend. Videotapes of the sessions are made for families to borrow free of charge. May, first newsletter to over 100 people. The Hartford Courant, Hartford, Connecticut features PSP and the growth of SPSP in an article about the National Organization for Rare Disorders (NORD). Nearly 1,000 copies of our announcement flyers are distributed at the American Academy of Neurology meeting in Boston, Massachusetts. SPSP encourages interest in and seeks funding for an international symposium of scientists to discuss PSP. New and additional language which would describe the effects of PSP are submitted to Social Security Administration for inclusion in the definition of a disability criteria for neurological disorders. Visits are made to national legislators to request funding for PSP research through the NIH. DuPont grants $2,500 toward producing a 40 minute videotape for neurologists and neuroscience nurses which depicts presentations on diagnosis of PSP filmed at a conference in Barcelona, Spain, in December, 1991. Our membership numbers 200 by the end of the year.

1992 – Letters, newsletters and membership forms introducing the Society are mailed to members of the Association of University Professors of Neurology. Recipients are encouraged to inform SPSP of any research being conducted which would be of interest to members and to also inform us of any proposals for promising research projects. An announcement of the Diagnostic Videotape is enclosed. Availability of the PSP diagnosis videotape is announced in the Newsletter of the American Academy of Neurology. Further corporate funding is gained for producing the newsletter with the hope that it might become a quarterly publication. PSP families and patients are encouraged to consider brain donation. – A list of “Communicators” is first published in the “PSP Advocate.” The names, addresses and phone numbers of persons who have indicated that they would like to exchange experiences with others are listed by state. Informational materials are exhibited at meetings of both the American Association of Neurologists and the American Neurology Association. SPSP continues legislative efforts to gain funding for PSP research at the NIH. Congress informed NINDS of its special interest in PSP and its intention to ask for research plans during FY 1994 appropriations hearings. Our membership numbers nearly 400 by the end of the year.

1993 – Our first research grant of $2,000 is awarded to Dr. David Rye at Emory University School of Medicine. Announcements of SPSP’s intent to grant $2,000 to a medical student who devotes Summer, 1993 to an important PSP research project are sent to the dean of students at 130 medical schools. Legislative focus changes to requesting that the National Institutes of Neurological Disorders and Stoke shall establish, by the end of 1995, five research centers to conduct intensive research into “Movement Disorders.” A PSP disability rating scale and staging system are established at the meeting of the International Congress of Movement Disorders. Dr. John Steele, one of the 3 physicians who first identified PSP as a distinct neurological disorder in 1963, and who continues to do research on Guam, meets with the SPSP Board of Directors in Baltimore. The Second Patients, Families and Caregivers Symposium is held on October l6, 1993. Brigadier Michael Koe attends and is encouraged to start PSP Europe in England. “PSP: Some Answers” by Dr. Golbe is translated into Spanish for distribution. The second and third issues of the PSP Advocate Newsletter have been published; the newsletter mailing list has grown to 1200.

1994 – Dr. Golbe summarizes recent research on PSP at the 11th International Symposium on Parkinson’s Disease in Rome on March 29, 1994. – Jordan Grafman, Ph.D., Dr. Irene Litvan and SPSP collaborate on surveys sent to the SPSP mailing list to obtain medical histories, and patient and caregiver responses to psychological issues related to PSP in the hopes that the results “will inspire new paths of investigation here at the NIH.” – The PSP Advocate becomes a quarterly publication. – Legislation efforts are directed to the Hatfield Bill or Udall Bill which seek an influx of funding into the study of Parkinson’s disease “and related disorders and which will provide services to patients and families. – A third annual Summer Student Research Fellowship in PSP is awarded. SPSP installs an 800 telephone number. – Beth Ness of Bradshaw, Nebraska becomes The Society’s Executive Director, as the failing health of David Saks forces him to assume the title of “Administrator.”

1995 – SPSP contributes $10,000 to partially fund the publication of the content of a symposium of international scientists held at the NIH on May 5-6, 1995. The purpose of the meeting was to define the clinical criteria for the diagnosis of PSP. SPSP President Joanne Armstrong and Board members Dr. David Zee and the Honorable Sharon Pratt Kelly, meet with Dr. Zack Hall, the new Director of NINDS. SPSP asks for support for our legislative plan for five Movement Disorder Centers and seeks further emphasis on PSP research. Dr. Lawrence Golbe chairs a session on PSP at the main meeting of the Movement Disorders Society. David Saks poses the question, “Should we really change from an all volunteer organization to one with paid staff?” The May 3rd SPSP Symposium for Patients, Families & Caregivers is held at Johns Hopkins. Almost 100 persons attend. SPSP gains office space in the Johns Hopkins Hospital, Outpatient center. A full time secretary is hired to answer phone inquiries and distribute materials. David Saks, founder, dies in September at the age of 81. And what did I do as President throughout these beginning years? I served as David’s sounding board and encourager, a typist whose minimal skills were faster than David’s method of one finger typing due to the effects of a stroke, a letter writer and envelope stuffer, a postal courier, phone answerer, message taker and a SPSP delegate to meetings at NORD, or the NIH which David’s lack of mobility barred him from attending. But perhaps, most importantly, I read the heart wrenching letters and listened on the phone to the tales of frustration and exasperation of PSP patients and families and I was able to respond, “Yes, I know, I’ve been in your shoes”, I emphasized, “but now we have an organization that can give you information about the disorder, tell you of a support group, and explain how research is drawing nearer to finding a cause and cure.”

The year 1995 was a pivotal, transitional year for SPSP. Volunteers involved with the daily operation of the Society were living great distances from one another and all had constraints which impacted the time they could devote to the Society. David Saks, the founder, was in failing health and had given up his roles as Executive Director and Newsletter Editor. He moved to Florida struggling to fulfill his vision of his responsibilities as a self-appointed “administrator” of the Society. Beth Ness, the Executive Director in Nebraska, had remarried and her husband was anxious to have her company on the many trips he had planned for his retirement years. Dr. Stephen Reich, SPSP Board Chair in Baltimore, Maryland was grappling with an increasing number of patients and academic/research responsibilities at Johns Hopkins.

Two important factors brought focus to the administrative and future development of the Society. First, in mid-1995, the Society moved to shared office space in the Johns Hopkins Hospital Outpatient Center and hired its first staff member. This person was responsible for distributing materials and answering the 800 phone number which had previously been answered wherever the executive director resided. The second factor was Margaret and Claude Vannoy’s contribution of $50,000 later in 1995. This event was truly a catalyst; the first major gift to the Society! It enabled the Society to more than double the funds available for research funding in that year. It also motivated the SPSP Board’s decision to initiate a search for a part time Executive Director. The Society for PSP entered the calendar year 1996 with new energy, and a sharpened focus….

1996 – Donations total $96,000. Three $10,000 research grants and two $2,000 Summer Fellowships are awarded. Five presentations directly related to PSP are presented at the American Academy of Neurology meeting. Eleven original research presentations on PSP are included in the 1996 presentations at the 4th International Congress of Movement Disorders. Ellen Katz is hired as an Executive Director, to serve 28 hours a week, and to work mostly from her office in her home due to the difficulty in physically placing her with the secretary in the 75 square feet available to SPSP at Johns Hopkins Outpatient Center. 3,000 issues of the PSP Advocate are sent quarterly.

1997 – Donations total $653,140. Research grants offered are raised to $20,000 from the $10,000 previously offered. Nine projects have been funded in the past three years, a total of $100,000 distributed. SPSP receives its first major gift designated for research $10,000 to establish the Jerome and Dorothy Blonder Research Fund. Jay Troxel gives a $400,000 donation to support research over a period of 5-7 years. Additionally, an Eloise Troxel grant is to be given each year at the $50,000 level. The Fourth Biennial Symposium for Persons with PSP and Caregivers is presented at a hotel in Baltimore, MD. 240 persons attend. Support groups grow to 13 around the nation. SPSP establishes a website: www.psp.org. The Society has a presence at meetings of the American Academy of Neurology and the American Ophthalmological Association. Seven presentations of original research on PSP are given at the annual meeting of the American Academy of Neurology. The PSP Advocate begins to publish for the medical community a list of periodical/journal articles relating to PSP. A feature article on PSP appears on the first page of the “Baltimore Sun” newspaper. “Climb for a Cause” is launched, as Roger Brisson seeks pledges for his climb of Mt. Aconcagua in Chile. He plans to ascend the highest mountain in the Western hemisphere, 22,860 feet. The SPSP office receives 6,500 phone calls; 3000 informational packets are mailed to inquirers. The Executive Director’s position is expanded to fulltime; additional employees are hired.

1998 – Donations total $603,372. Nine SPSP research grants are awarded, totaling $209,000. Corporate and Foundation gifts are received. The revised SPSP bylaws state that there will no longer be membership dues. First annual campaign raises $60,000. SPSP’s Board of Directors institutes a Development Committee which would seek to ensure funding to support the mission of SPSP. SPSP outgrows the 110 square feet of space at Johns Hopkins Outpatient Center and moves into the Woodholme Medical Building in Baltimore, MD. Gifts from Mr. and Mrs. William Budge and Mr. Jay Troxel are used to furnish the space. SPSP staff expands to 7; the responsibility of SPSP Advocate Editor becomes a paid position. Nancy Brittingham had been doing the ever-expanding job voluntarily for 3 years. John B. Ricker, Jr. in memory of his wife, Jane Darling Ricker, underwrites the cost of publishing and mailing the quarterly editions of the PSP Advocate to 9,000 recipients. Roger Brisson raises over $70,000 from 700 donors for the “Margaret Parker Research Fund.” Although health complications force him to stop before the summit, the “Climb for a Cause” flag makes it to the top of Mt. Aconcagua with other climbers. A Listserv is developed. In November, the Los Angeles Support Group sponsors the First Regional Symposium on PSP. Seventeen presentations of original research are presented at the 5th International Congress of Movement Disorders. SPSP has a presence at the American Academy of Neurology, American Psychiatric Association, and the Movement Disorders Society. The “Eloise H. Troxel Memorial Fund” supports the SPSP Brain Donation Program at the Mayo Clinic Jacksonville, in Florida . SPSP receives a bequest of $125,000 from the estate of Frank W. Weymouth. The family of Ruth Lindenbaum sponsors the first New York Support Group meeting and generously funds the publication of the updated educational pamphlet “PSP Some Answers.” SPSP receives 5,700 phone calls on its 800 number.

1999 – Donations total $713,821. Annual campaign yields $80,000. $260,929 is awarded to ten investigators at prestigious research institutions around the country and Europe. The Society and The Office of Rare Disorders, (The National Institutes of Health) jointly sponsor the First International Brainstorming Conference on PSP March 18-19, 1999 at the NIH. Seventy-eight researchers from all scientific disciplines attend to focus on the cause, cure and management of PSP. SPSP Board of Directors embarks on a year-long collaboration by the Board, staff and volunteers to formulate a Strategic Plan for the years 2000-2003. A relationship is established with PSP France. A portion of the profit from each copy sold of Susan Baggette’s children’s book Jonathan and Papa is donated to SPSP. Jonathan’s grandfather has PSP. The Fifth Biennial PSP Symposium for Persons with PSP, Families and Caregivers is held November 12-13 at BWI Marriott, Baltimore, Maryland. More than 300 persons attend. Ellen Katz, Director of SPSP, is appointed to the Board of Directors of the National Organization for Rare Disorders. Dudley Moore, actor, composer and pianist announces that he is receiving treatment for PSP. Music for All Seasons creates the “Dudley Moore Research Fund for PSP” in November 1999. Dudley Moore’s interview with Barbara Walters on ABC’s 20/20 brings news of PSP and the “Dudley Moore Research Fund” to millions of homes. Over 20 local ABC affiliates air stories about local persons with PSP.

2000 – Cincinnati Reds pitcher Denny Neagle announces that his father-in-law suffers from PSP. He plans to donate $100 to SPSP for each strikeout he pitches during the baseball season. The Los Angeles PSP Support Group works with the Society and organizes the Second Regional Symposium for Persons with PSP, Families and Caregivers. It is held at the Jules Stein Auditorium at UCLA. Over 110 persons attend. The Society for PSP has an exhibit and distributes materials at the 52nd American Academy of Neurology in San Diego. Ellen Katz, Director of the Society for PSP, takes an active role on the Board of NORD (National Organization for Rare Disorders). She is involved with approving new membership applications and in planning NORD’S role in promoting advocacy for persons with rare diseases campaign in Washington, D.C.