Stuttering Foundation of America -- Looking Back and Looking Forward
About the presenter: Jane Fraser graduated from Bryn Mawr College with a BA in Russian studies. Graduate work at Universite de Strasbourg, France, in Russian and Linguistics. Has been president of the Stuttering Foundation since 1981. Is a member of the NIDCD Advisory Council of the NIH, 1996-2000. From 1978-1980, worked as editor in cancer research, Institut Gustave Roussy, Villejuif, France. From 1975 to 1978 worked as interpreter and translator, Assemblee Nationale (Congress), Paris, France. She has been Trustee of Hamilton College, Co-chair, Parents Association, Pitzer College. Member of the Societe Francaise de Phoniatrie, and IALP.
Stuttering Foundation of America -- Looking Back and Looking Forward
by Jane Fraser
Although many of you know the Stuttering Foundation publications, you still may not be aware of its history -- so I would like to take a few minutes to acquaint you with how and why the organization came into being 51 years ago!
SFA Founder Malcolm Fraser, my father, was born in 1903, the youngest of four children, son of a stern Presbyterian minister. He stuttered quite severely from an early age as did one of his older brothers who went on to become a noted journalist.
When he was about 13 years old, he had his first formal therapy with Dr. Frederick Martin, Superintendent of Speech Correction for the New York City Schools. Dr. Martin succeeded in helping him become fluent in the clinic and decided to include young Malcolm in a presentation he was giving to a group of eminent physicians. When instructed to speak on stage, my father froze with fear and couldn't utter a single syllable. For years -- even at age 90 -- when many other memories had faded, he still remembered that horrible day.
At age 44, with a successful career in the auto parts business, but also with a significant stuttering problem, Fraser formulated a plan to create a non-profit organization dedicated to helping others who stutter. His first step was to contact a lawyer in Memphis to set up the Foundation and then to make his first donation of $ 2,500.00. In those days a new house cost about $6000, a new car about a thousand dollars; so it was quite a significant gift. My father then decided to visit with Dr. Charles Van Riper, one of the leading people in the field at that time.
One of the first projects they decided on was a study on the effect of avoidance on stuttering . . . so in 1950 a grant was made by the Speech Foundation to Western Michigan to fund this research by Dr. Van Riper. When completed, the study was sent to The Journal of Speech and Hearing Disorders for publication. Dr. Van Riper received a rejection letter back from the editor, Dr. Fairbanks, who said, "My reason for turning this study down is general dissatisfaction with the reliability and validity of all such research studies."
Undaunted by this seeming setback, in 1954 the Speech Foundation then made a grant to Dr. Charles Elliott at Northwestern University to assist in organizing and developing its program of "speech rehabilitation" as it was known at that time. Dr. Joseph Sheehan and other clinicians trained by Van Riper were brought in to help run the summer program. The program was a success and Dr. Elliott pointed out that he was even able to secure matching funds from the University for it. But it only reached a limited number of individuals who stutter and my father's hope was to help people who stutter throughout the entire country.
At this point, he again met with Dr. Van Riper and others and they settled on a new project which is described in a letter from Dr. Van Riper to Dr. Joe Sheehan: a week long conference to work towards "an all-out program of basic research, experimental therapy, and theoretical formulation for the disorder." The plan formulated by Van Riper and my father was to bring together eminent speech pathologists as well as guest authorities in psychology, psychiatry, and even in cultural anthropology for an entire week of discussions to see if they could agree upon some general guidelines for a comprehensive program on stuttering. The first such conference was held year-end 1956-57 in Delray Beach, Florida. Dr. Oliver Bloodstein reminded us a few months ago about the arch rivalry between Dr. Van Riper and Dr. Wendell Johnson and how incredibly tense this meeting was.
In the fall of 1956 before the Delray Beach conference, at the 33rd ASHA Convention in Cincinnati, there were a number of programs on stuttering. One session was on Interdisciplinary Approaches to Stuttering and included Van Riper and my father as co-chairmen; another was on Group Therapy in Action chaired by Wendell Johnson; and another was a Symposium of Recovered Stutterers just as we saw 40 years later at the 1996 ASHA Convention in Seattle.
Getting back to that Delray Beach conference, one of the important things that came out of the first conference was the fact that Dr. Stanley Ainsworth was chosen to chair the next conference. He understood what was needed to keep this group of authorities focused on the task at hand, producing a book to help those who stutter; the result of the next conference was just that -- a slim book entitled On Stuttering: Its Treatment. It was published 38 years ago in 1960.
The authors (Van Riper, Johnson, Sheeran, Williams, West, Ainsworth, Luper, and Freund) state in the introduction "the members of this group, encouraged and guided by Malcolm Fraser, have laid aside their prejudices. They have been surprised that they have so much in common. This book summarizes those objectives and steps of therapy on which the participants agreed." We tend to forget nowadays how much disagreement there was in the 50's and 60's; reaching any agreement at all was a monumental task. These conferences went on through the years, each one culminating in another book on stuttering.
My mother, Charlotte Fraser, worked for the Foundation without pay from its inception through 1969 when the orders for books finally got too heavy for her. In fact during those early years she was the entire staff of the Stuttering Foundation.
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We've taken a look at the past. Let's see what's happening now and take a look toward the future.
Since its first publication, SFA materials have reached well more than five million individuals and they have been translated into 22 languages. One of our successful books is Self Therapy for the Stutterer, written by Malcolm Fraser. It is now in its 8th edition and has reached more than 500,000 individuals through the years. It has been translated into eight foreign languages most recently Spanish, Russian, Finnish, Czech, and Danish. These translations have always been done by people who stutter who were helped by the book and wanted to share it with others in their native tongue.
The research done by Dr. Ehud Yairi of the University of Illinois on Pediatricians Attitudes about Stuttering encouraged us to begin distributing materials at the conventions of the American Academy of Pediatrics and the American Academy of Family Physicians in 1988. Dr. Dean Williams and his wife Bette became our regular "brother" at these many medical conventions. Although much work remains to be done, they had a very positive impact on the way many physicians now view stuttering.
The interest we received from physicians led us to recognize the need for a publication aimed specifically toward physicians. In 1992, we published The Child Who Stutters: To the Pediatrician. In 1993, it was sent to 26,500 Board-certified members of the American Academy of Pediatrics. Its impact is being felt daily through the number of calls we get from parents whose pediatrician gave them our number.
We have also developed a series of brochures that are sent out free of charge to anyone calling our toll-free number, 800-992-9392. The newest additions to these are the Spanish translations.
In 1982, we began a new format for conferences -- the two-day symposium. For the last nine years, we have been focusing on what clinicians in the schools can do to be more effective with children who stutter.
This year, we held the tenth conference for school clinicians. Attendees tell us that after these meetings, they are excited to get back to their schools and put into effect what they have learned. We are also seeing a ripple effect as these same clinicians give in-service programs for their own school districts.
In working toward the idea of having specialists in stuttering therapy (a long time hope of Malcolm Fraser), the first Workshop for Specialists in Stuttering was held in 1985, thanks to the efforts of Dr. Hugo Gregory. Participants in this program have come from the United States and 27 other countries around the globe. Including last year's group, there are now 180 graduates of this program in the U.S. and 60 in countries around the world.
Many graduates of the Specialists Workshop have gone on to share what they learned with others: several examples are Anne Marie Simon of Paris, France, and Peggy Wahlhaus of South Africa.
Susan Dietrich, another Northwestern "Workshopper", started a five-day summer workshop three years ago at the University of New Hampshire. It was attended by 20 public school clinicians. Last year the workshop was held at Boston University -- and we had an overwhelming number of applications to it -- an indication of the need for more information and training in stuttering therapy. This year it expanded successfully into North Carolina.
In 1985, SFA began to turn its attention to public awareness of the problem. We started the toll-free hotline on stuttering, 800-992-9392 (901-452-7343 for foreign access); we also began sending out press releases about stuttering to daily and weekly newspapers across the country that same year. This resulted in hundreds of stories about stuttering in local papers.
In 1989 we were on CBS This Morning; in 1991 and 1993, The Today Show; and in 1996, CNN with John Stossel. In 1995 and again this year, Ann Landers featured us in her outstanding column, resulting in more than 8,000 calls to our toll-free number.
We are thankful to magazine publishers for our record number of public service ads again this year. This is space which is given to us free of charge. During the past twelve months, more than 420 different magazines have donated space worth more than one million dollars.
In 1991 we began sending public service announcements (PSA's) to television networks and stations. This has been another record year for televised public service announcements. Our PSA's are on six national networks: ABC, CBS, NBC, FOX, America's Health Network, and Kaleidoscope; they are also on 32 other local stations across the country.
The results of these efforts have been an obvious increase in the awareness of stuttering -- and all of this means an ever-increasing number of calls for SFA's hotline number. We have anywhere from 2000 to 3000 calls a month. At this time, we are sending out close to 1000 information packets a week in addition to book and videotape orders.
In 1992 we announced the SFA Media Award for Excellence in Reporting. This year, the 6th annual Media Awards was announced during National Stuttering Awareness Week.
Four years ago, recognizing the growing importance of videotapes, we turned our attention to producing a 30 minute videotape for parents of youngsters who stutter: entitled : Stuttering and Your Child: A Videotape for Parents. Dr. Edward Conture headed this project with Dr. Barry Guitar and Dr. Dean Williams. Two years ago, we finished work on a new tape for teenagers who stutter: Do You Stutter: Straight Talk for Teens. And last year, we completed a videotape for clinicians which focuses on the elementary school-age child who stutters. It's called Therapy in Action: The School-Age Child Who Stutters.
Finally, recognizing the Internet as having superb potential for efficient distribution of our information, we developed a web page (www.stutterSFA.com) earlier this year. The vast majority of the comments about our web page have been extremely complementary and we are continuing to expand and enhance our web page.
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Let's look for a moment at SFA's organizational structure. The Stuttering Foundation is a nonprofit organization, tax-exempt under Section 501(c)(3) of the Internal Revenue Code. The designation of "foundation" causes some misunderstanding because many people assume that a foundation grants funds for projects of other organizations. While we are a private foundation, we are more specifically an operating foundation -- that is, one which uses its funds for its own operations rather than granting to others.
The operating budget of SFA is supported 32% by contributions from the public, 50% by income from the endowment, and 18% by receipts from distribution of educational materials. Charges for those materials are much less than cost. A typical book that is priced at $1.00 cost us $1.24 for postage alone at a book rate. The cost of production, printing and handling is all paid with SFA funds. However, we feel that making this small charge avoids requests from those who are not actually interested.
We work very hard at concentrating expenditures on program services -- in 1997 less than 5% went for administrative expenses, including a minuscule 6/10 of 1% for fund raising. What this means is that donated dollars go directly into helping people who stutter -- not high rents, fancy offices, or fund-raising costs. We hope that this will help you to better understand the operations of Stuttering Foundation of America.
August 23, 1998
