R14364_SummerNews.qxd 5/2/07 9:37 AM Page 1
www.stutteringhelp.org • 1-800-992-9392 • www.tartamudez.org THE STUTTERING FOUNDATION A Nonprofit Organization SUMMER 2007 Since 1947...Helping Those Who Stutter Is stuttering characterized by subtypes? Ehud Yairi, Ph.D. University of Illinois Stuttering With few exceptions, every en- tity in the universe can find its place within a system of classifi- didn’t bench cation. These have an impor- tant role in the Bob Love organization and enhancement of knowledge. Although certain features of stut- tering are rela- tively consistent, Ehud Yairi, Ph.D. such as the age at onset of the disorder and the presence of cer- tain core speech disfluencies, there are large differences in many aspects of the disorder across people who stutter, includ- Photo courtesy of the Chicago Bulls ing variations in expression of symptoms and their severity. In addition to symptom diver- NBA All-Star leads FACTS ABOUT BOB LOVE sity, in many ways the disorder Seasons with the Bulls: of stuttering is interwoven with 2007 campaign 1968-1977 linguistic, phonetic, cognitive, Jersey number: 10 NBA All-Star Bob Love will lead Jersey retired: social, emotional, physiological the 2007 campaign for National domains, as well as other do- Jan. 14, 1994 Stuttering Awareness Week, May Career highlights: mains. It has also been explained 14-20. NBA All-Star 1971, 1972, as emerging from a wide range 1973 of possible etiologies. Still, for a Love knows first-hand the experi- ences of someone who stutters. He All-NBA Second Team Continued on page 6 has overcome considerable frustra- 1970-71, 1971-72 NBA All-Defensive tions and setbacks since his glory Second Team 1971-72, years with the Chicago Bulls. 1973-74, 1974-75 Inside... “Bob is more than a great basket- Led the Bulls in scoring New genetic insights ball star and community leader,” said for seven straight into stuttering ...... 2 Jane Fraser, president of the 60-year- seasons Ranks third among Bulls New survey results old Stuttering Foundation. “He was all-time scorers (12,623 that may surprise you...... 5 chosen to serve as chairman because his courage in coping with his speech points) Experts from around the world Currently serves as the join forces for new DVD . . . . . 6 impediment serves as an excellent Bulls director of Learn what Julia Roberts and her role model for the millions of people community affairs. brother have in common. . . . . 13 worldwide who stutter.” Source: www.nba.com Continued on page 10 R14364_SummerNews.qxd 5/2/07 9:37 AM Page 2
Years 2 www.stutteringhelp.org 60of Service 1-800-992-9392 Studies in a unique community give SFA launches new new genetic insights into stuttering public service By Dennis Drayna, Ph.D. tree that contains over 1600 indi- campaign NIDCD viduals, and can be traced back 13 generations. At the roots of A study by researchers in Illinois this family tree are a group of 64 Tillis educates public has recently been founding individuals, who came published that to the United States from Europe The new year ushered in a new provides new sup- in the 1800’s and settled in the radio campaign by the Stuttering port for genetic Northern United States. Their Foundation. factors in stutter- descendents have intermarried This year, the Foundation sent ing. The re- extensively over time, and such public service announcements fea- searchers were led populations often provide unique turing country music singer Mel by Dr. Nancy J. insights for geneticists. Tillis to every Cox at the The Illinois researchers tested country music station in the University of Dennis Drayna, Ph.D. genetic markers, which allowed Chicago, and the them to track all of the chromo- United States. study, published in the Journal of somes inherited through these “Our radio Fluency Disorders, had major con- families. These marker studies PSAs have cer- tributions from researchers at the showed regions on several chro- tainly resonated University of Illinois at Urbana- mosomes, including chromo- with listeners. Champaign and the University of somes 3, 13, and 15 that appear to The response has Mel Tillis Illinois at Chicago. carry genes that help cause stutter- been tremen- These investigators studied a ing in this population. These re- dous,” said Susie Hall, resource religious group known as the sults will help guide future studies coordinator for the Stuttering Hutterites, currently living in that will attempt to identify the Foundation. “We have received South Dakota. The group of specific causative genes, and thus calls from people across the coun- Hutterites that were studied are help researchers better understand try seeking more information on members of a remarkable family the causes of stuttering. ❑ stuttering.” Foundation President Jane Fraser added, “We look for- Stuttering makes national news ward to being a As seen on the screen, Dr. Phillip leading source of Schneider represented the SFA to continuing pub- discuss how to react when speaking lic education with someone who stutters and the through PSAs pros and cons of a device for stutter- and through all ing on ABC News Now in January. aspects of our John Stossel ABC News linked to the Stuttering comprehensive Foundation as a source of additional awareness campaign. And we in- help and information. vite others to join us in bringing View the interview at www.stut- attention to stuttering.” teringhelp.org. ❑ Last fall, the 30-second spot recorded by 20/20’s John Stossel went out to ABC radio Help for parents airs around the country stations nationwide. Many con- tinue to air John’s upbeat mes- Bobbi Conner, host of The Parents the better it is for children who sage about where and how to Journal on National stutter.” find help for stuttering. Public Radio, spoke with She emphasized that par- “This educational campaign Foundation President ents need to take the time has been a wonderful way to Jane Fraser about child- to educate themselves reach people who otherwise hood stuttering. about stuttering and sug- may be unfamiliar with the help “The more you gested many of the free re- we offer,” said Fraser. “The know about stuttering, sources — including tips radio stations have been most the more comfortable for parents — available at generous in providing air time.” you are,” Fraser told parents. the Foundation’s Web site, “The more comfortable you are, www.stutteringhelp.org. ❑ R14364_SummerNews.qxd 5/2/07 9:37 AM Page 3
Years SUMMER 2007 60of Service 1-800-992-9392 3 New drugs for stuttering may be on the horizon Gerald A. Maguire, M.D. tering. are being planned, and Indevus University of California, Pagoclone is a medication under is working closely with the Food Irvine School of Medicine development from Indevus and Drug Administration (FDA) A medication for stuttering? Pharmaceuticals. to achieve approval so that this This question has plagued clini- In May 2006, Indevus released medication may one day be rou- cians for years with the general results of the tinely available from a physi- consensus that it could never be largest pharma- cian’s prescription. attained. With advancements in cologic trial of For the time being, it is only neuropharmacology, medical sci- stuttering ever available as part of a research ence is now closer than ever in the completed. study. The next study of pago- development of medication treat- Pagoclone af- clone will begin this summer, and ment for stuttering. fects a natural one can learn more by accessing In the last ten years, studies sug- neurochemical in www.stutteringstudy.com. gest that dopamine-blocking med- the brain known In addition, the University of ications are effective in reducing as GABA which California, Irvine, has received a stuttering symptoms. has been postu- Gerald Maguire, M.D. generous gift from the philan- These studies employed the lated to play a thropists, Granville and Sidney gold-standard of being placebo- significant role in stuttering. Kirkup, which will support further controlled and double-blind The study utilized a double- research on the medical treatment (meaning that the subjects and blind, randomized design of of stuttering. clinicians did not know if the spe- over 130 adult individuals who The University of California, cific individuals were receiving a stutter. Pagoclone was found to Irvine will participate as a site in real pill or a fake pill). improve stuttering symptoms in the pagoclone study, but will These studies were of relatively over 50 percent of the individu- also be investigating other med- limited subject size so further re- als treated—statistically greater ications for the treatment of stut- search is warranted before these than those receiving a placebo. tering as well. medications are to be routinely Pagoclone was found to be For further information, please used in stuttering. well-tolerated with only minor e-mail [email protected]. No one medication is without side-effects of headache and fa- ❑ the potential of side-effects and tigue reported in a minority of Even though medications for this class of medication is associ- those treated. stuttering may be on the hori- ated with weight gain and the po- In this study, pagoclone not zon, no form of therapy for stut- tential for blood sugar increases. only improved the fluency of tering is a cure. Therefore, fu- However, a novel medication, speech but also reduced the so- ture treatment will likely involve pagoclone, holds promise as an cial anxiety that often accompa- the combination of medication effective, well-tolerated medi- nies stuttering. with speech therapy to achieve cation for the treatment of stut- More studies of this compound the optimal results. ❑
Annual Audit of Foundation The annual audit of the Stuttering Foundation fund raising are very low, and since we are for- financial reports for 2006 was recently com- tunate to have an endowment which more than pleted by the accounting firm of Cannon and covers our overhead expenses, donors can be Company, Certified Public Accountants, assured that their gifts will go directly to sup- Memphis, Tenn. Following is a recap of funds port our program services. and expenditures for the year. The Foundation is a private operating founda- The 3.8% of expenditures for administration tion which expends its funds on its own programs and general expenses and the 6/10 of 1% for and does not make grants to other institutions. Funds expended for: Creation, production, printing and distribution of educational materials ...... $509,589 . . . . .39.7% Public information and education ...... 339,594 . . . . . 26.5% Educational symposia for professionals and research . . . 170,451 . . . . . 13.3% Spread the word Therapy program ...... 127,428 ...... 9.9% With National Stuttering Maintain Web site and toll-free information hotline...... 79,444 ...... 6.2% Total for Program Services: ...... $1,226,506 . . . . . 95.6% Awareness Week May 14-20, Other expenditures: now is the perfect time to order Administration and general ...... 48,326 ...... 3.8.% posters, books, brochures, DVDs, Fund-raising expense ...... 8,273 ...... 0.6% and even T-shirts to spread the Total Expenditures: ...... $1,283,105 ...... 100% word about stuttering. ❑ R14364_SummerNews.qxd 5/2/07 9:38 AM Page 4
Years 4 www.stutteringhelp.org 60of Service 1-800-992-9392 Elisabeth Versteegh Putts benefit excellent cause remembered Memphis-based Shelby Railroad Our readers will be saddened to Services Inc. donated an amazing learn that Elisabeth Versteegh passed $3,854 on Nov. 2 to the Stuttering away on March 9, Foundation following the compa- 2007, at her home in ny’s annual Tin-Cup Tournament. Geldermalsen, The The Stuttering Foundation was Netherlands. She selected in honor of Ruth would have been 90 McGuinness Tarver, the late moth- John and Kirk Tarver stand with Jane on Aug. 17. er of company president and Fraser during the golf outing. Els, as she was founder John Tarver. Ruth stuttered Elisabeth known, was recog- Versteegh from the time she was a young Tarver, and to Shelby Railroad nized as one of the child, said Kirk Tarver, the compa- Services,” Fraser said during the leading speech therapists in the ny’s vice president and John’s son. event. “I am thrilled to receive this world. “She was a great lady,” Kirk tremendous gift. This is a wonderful “I met Els by chance in 1981,” said. “It didn’t matter to us, but it tribute to Ruth McGuinness Tarver said Jane Fraser, SFA president. embarrassed her. Back in the and also to the good work that “Her niece, Betty Vermey, Dean of ‘30s, there wasn’t any help.” Shelby Railroad Services does.” Admissions at Bryn Mawr College, “On behalf of the Stuttering This was the fifth year Shelby stayed at my home overnight and Foundation, I would like to thank Railroad teamed with the headed to Geldermalsen the next everyone who donated to this Foundation to make a difference day to visit Els. When I mentioned worthwhile cause, to John and Kirk for children who stutter. ❑ my interest in stuttering, Betty quickly said that her aunt, Els Versteegh, specialized in stuttering.” Papers, magazines spread the word This resulted in a lifelong friend- ship. Els participated in the 1982 It seems to be spreading. But Love, conservationist Alan Stuttering Foundation week-long that’s a good thing in this case. Rabinowitz, Winston Churchill, conference and wrote a seminal The Stuttering Foundation’s TV star Nick Brendon and coun- chapter for the book, Stuttering public service ads are popping up try music singer Mel Tillis. Therapy, Transfer and Maintenance. nearly everywhere you look. PSAs provide a unique way to She greatly influenced others who While SFA public service ads reach those who otherwise may attended that meeting: Bill Perkins, have been found in magazines not be familiar with the help Joe Sheehan, Einer Boberg, and for years, newspapers are now available for stuttering. Malcolm Fraser. starting to join Combined, Jane remembers, “My father the cause. these publica- noted at week’s end that ‘Els is Newsday of tions reach the brightest woman I have ever Long Island, more than 60 met and certainly the most knowl- N.Y, and the million readers. edgeable about stuttering.’” New York Post The SFA pro- “In later years, Els translated have run the vides publica- Eelco DeGeus’ children’s book, Foundation’s tions with sev- Sometimes I Just Stutter, from ads several eral sizes and Flemish into English and sent it times. choices of pub- to me,” added Jane. “I was as Plus, lic service ads. impressed with it as Els was and Newsweek, This year, the the Stuttering Foundation decid- Time, ESPN, Foundation ed to publish it.” Cosmopolitan, also designed The fact that it was now in English Cosmo Girl, New York, AARP, the PSAs using new computer made it more accessible to others, Seventeen and Ladies Home software. This assures the PSAs and this in turn led to its being trans- Journal have all generously donat- are compatible with every com- lated into a host of other languages ed space to help spread the news to puter system. throughout the world. millions of readers about stuttering. The newspaper and magazine This is just a small example of Good Housekeeping even ran the PSAs are in addition to the radio the many ways that Els reached PSAs two months in a row! announcements and online ads people who stutter. She was a Among those featured in the provided free by Google Grants. wonderful warm person who en- ads are 20/20 co-anchor John Next time you read a newspaper riched the lives of all who were Stossel, basketball legend Bob or magazine, be on the lookout. ❑ fortunate enough to know her. ❑ R14364_SummerNews.qxd 5/2/07 9:38 AM Page 5
Years SUMMER 2007 60of Service 1-800-992-9392 5 Alarming statistics show training urgently needed A dismaying number of speech- language pathologists have little A LOOK AT SURVEY RESULTS training in fluency disorders, ac- By Glen Tellis, Ph.D., College Misericordia, Dallas, PA cording to a recent survey of 255 There were 255 respon- should tell children who stut- school speech-lan- dents. Of these, 87.8% had ter to speak slower to reduce guage pathologists MA/MS degrees and 9.4% had stuttering. from 16 counties in BA/BS degrees. 64.4% do not use attitude Pennsylvania, New 64.7% had their Certificate of scales to assess stuttering. Jersey, New York, Clinical Competence (CCC). Connecticut and Glen 69.2% do not know about in- Tellis, Ph.D. tervention techniques to ad- Virginia. The survey A majority (95%) had previ- ously taken courses in fluency dress bullying. comprised of 49 questions was disorders. conducted by Glen Tellis, Ph.D., 33.3% could not identify the and his colleagues at College The average SLP experience core behaviors of stuttering. Misericordia, Dallas, Pa. was 16.37 years and the average 43.5% were not comfort- Nearly half of those respond- experience working with children able working with children ing to the survey indicated they who stutter was 10.96 years. who stutter. were “not comfortable working In the 16.37 Results 42.5% could not with children who stutter.” years, most SLPs differentiate be- Plus, a majority of respondents attended fewer ∞ 69.2% do not know about tween the two than 2 workshops intervention techniques to address main approaches did not know how to teach most in stuttering. bullying (Q16) stuttering modification tech- ∞ 33.3% could not identify the core (fluency shaping niques, didn’t know about genet- On average, the behaviors of stuttering (Q18) and stuttering SLPs had only ∞ 43.5% were not comfortable modification) to ic research on stuttering and working with children who stutter treated 12.12 chil- stuttering therapy. were unaware of how to find (Q21) dren who stuttered Of the SLPs support for those who stutter. throughout their careers and on Many of those surveyed did not who had ASHA’s CCC, a cause average had 2.02 children who for concern is that: even realize that ASHA has a stuttered on their caseloads. Special Interest Division (SID) 64.5% did not know how to The SLPs had only attended contact a Fluency Specialist. for fluency disorders. an average of 1.68 half day flu- Since graduating from col- ency workshops since graduat- 39.3% indicated that they lege, 44.7 percent of the re- ing from college and 1.60 full would not treat initially be- spondents hadn’t attended a day workshops. cause the child may sponta- neously recover. half-day stuttering workshop; 46.3% of respondents had 40.9 percent never attended a never heard of ASHA’s Special 55% indicated that they full-day stuttering workshop. Interest Division in Fluency would not treat when disfluen- On average, the SLPs had only Disorders - Fluency Specialist cies are first noticed. attended 1.68 half-day work- Certification and 68.4% did not 22.3% agreed that parents shops since graduating. know how to contact a specialist. should tell children who stut- “The findings of this survey Of the SLPs who had taken ter to speak slower to reduce show why training workshops a full semester of graduate stuttering. and conferences are more im- course work in stuttering, a 68.1% do not use attitude portant now than ever,” said cause for concern is that: scales to assess stuttering. Jane Fraser, president of the 66.4% did not know how to 71.5% do not know about in- Stuttering Foundation. “School contact a Fluency Specialist. tervention techniques to ad- clinicians just aren’t getting the 36.6% indicated that they dress bullying. basic training they need to make would not treat initially be- 32.6% could not identify the a difference in children’s lives. cause the child may sponta- core behaviors of stuttering. It is frustrating for all con- neously recover. 43.8% were not comfort- cerned — SLPs, children and 53.1% indicated that they able working with children parents.” would not treat when disfluen- who stutter. Stuttering Foundation training cies are first noticed. The full report can be found at workshops can be found online at 27.7% agreed that parents www.stutteringhelp.org. www.stutteringhelp.org. ❑ R14364_SummerNews.qxd 5/2/07 9:38 AM Page 6
Years 6 www.stutteringhelp.org 1-800-992-9392 60of Service New DVD already a blockbuster resource It was just released in March, and in clinical settings. It is as already Stuttering: Basic Clinical though you are in the therapy Skills is a winning production. room with them. Basic Clinical This DVD features more than Skills is an excellent addition to two hours of demonstrations of SFA’s collection of materials.” speech management strategies “It was a joy to premiere this for speech-language therapists DVD at the Texas Speech- working with children and adults Language and Hearing who stutter. Association’s annual convention It includes footage on identifica- at the end of March,” adds Carol tion, exploring stuttering, explor- Ecke, who represents the SFA at ing change, soft starts, changing many state conventions. “Since rate, voluntary stuttering, hold- people know the high quality of ing/tolerating the moment of stut- the SFA materials, this DVD was tering, pullouts, cancellations, rapidly scooped up by enthusias- transfer, and disclosure. tic attendees. The title may say “The new DVD shows a re- ‘basic,’ but the detailed therapy markable range of therapy tech- clips and instructional commen- niques and clinical skills for use “These well known and well re- taries by specialists in the area of with people who stutter of all spected professionals demon- stuttering are excellent for all ages,” says Carroll Guitar, one strate fluency shaping and stut- professionals. This product will of the producers of the DVD. tering modification techniques be around for a long time. ❑
Yairi Continued from front page is caused by either brain hyper- 1975), excitability or by emotionality. (d) concomitant disorders, long time stuttering has been New classifications have sur- such as stuttering associated with considered to be a unitary disor- faced throughout the modern his- motor or with language deficits (J. der. St. Onge and Calvert’s tory of speech pathology as re- Riley, 1971), (1964) remark that stuttering has flected in the writings of (e) developmental course, such been viewed as a “pathognomon- Froeschels (1943), and the more as Van Riper’s (1971) scheme that ic monolith” nicely summarizes recent work of Riley and Riley differentiates among four different this perspective. (2000) and Alm (2004), reflect- tracks. These two scholars posed the ing diverse views on the issue. Although a good number of questions: “What are we studying These classifications can be ideas have been offered, only when we study stuttering? grouped in many ways. For exam- limited research concerned Whatever it is, is it one, several, or ple, based on: specifically with stuttering sub- many?” Thus, the issue of (a) etiology, such developmen- types has been conducted. More whether stuttering is a single dis- tal stuttering in children and ac- typically, researchers have fo- order or one that includes discrete quired stuttering when onset oc- cused on a single dimension of subtypes gains great importance. curs in adults, or on several sub- stuttering, e.g., disfluency char- If subtypes exist, do they differ in types of psychogenic etiologies acteristics, motor skills, person- terms of etiology or relative con- (Brill, 1923), ality, brain hemispheric lateral- tributions of various factors? Do (b) prominent stuttering char- ization, thereby over-looking the they follow different developmen- acteristics, such as repetitions vs. multifaceted character of the tal courses? Does the nature of the stuttering disorder. sound elongations (Froeschels, These studies were also limited disorder vary significantly among 1943; Schwartz & Conture, to small groups of participants, them? The implications to theory 1988), or exteriorized vs. interior- and often fell short of adequate ex- and research design are obvious. ized stuttering (Douglas & perimental controls. Perhaps due Not less important is the question Quarrington, 1952), to these limitations they have not of whether subtypes respond dif- (c) biological characteristics, succeeded in generating strong ev- ferentially to various treatments. such as sex (Silverman & Zimmer idence for straightforward typolo- The concept of stuttering sub- (1979), family history of stuttering gies. So far, none of the proposed types was already entertained (Poulos & Webster, 1991), or classification systems for stutter- several hundred years ago when cerebral lateralization (Hinkle, ing as a disorder has been adopted it was proposed that the disorder 1971; Sommers, Brady, & Moore, Continued on page 8 R14364_SummerNews.qxd 5/2/07 9:39 AM Page 7
SUMMER 2007 Years 1-800-992-9392 7 60of Service Actor Michael Palin joins celebration Actor Michael Palin joined the December celebration that kicked off the beginning of a partnership be- tween the London centre named for him and the Stuttering Foundation. “I am enormously proud of the painstaking way in which our therapists, children and parents confront and deal with the prob- lem together as a team,” the actor said. “This shared approach is the reason why our many years have been so successful.” Michael Palin spends time The Stuttering Foundation and speaking with children. Michael Palin Centre joined forces in a transatlantic alliance as a way to help re- searchers, clinicians and children. A newly released DVD, Stuttering: Basic Clinical Skills, includes footages from both sides of Michael Palin with Member of the Atlantic. Travers B. Reid (left), life Parliament Emily Thornberry Palin, an actor, president and co-founder of and Jane Fraser. writer, and televi- the Association for Research sion host, has been into Stammering in Childhood, involved in a num- and Tom Hughes-Hallett, ber of TV pro- chairman of the board. grams, movies and travel films. Some of his most notable include Frances Monty Python’s Flying Circus, Cook (left) Ripping Yarns, Brazil, Around the and Willie World in 80 Days, Sahara with Botterill. Willie Botterill shares a laugh Michael Palin, Pole to Pole and with Luke Jeans, who recently shot ❑ footage for SFA’s new DVD Himalaya. Stuttering: Basic Clinical Skills.
Michael Palin, Tom Hughes- Hallett and Jane Fraser