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    Summer2006newsletter Summer2006newsletter Document Transcript

    • www.stutteringhelp.org • 1-800-992-9392 • www.tartamudez.org T HE S TUTTERING F OUNDATION A Nonprofit Organization SUMMER 2006 Since 1947... Helping Those Who Stutter 20/20’s Stossel leads campaign TM Google Grantawarded to SFA Stuttering Awareness Week May 8-14 The Stuttering Foundation’s Website, www.stutteringhelp.org,has received more than fivemillion hits since it was re-designed last fall. And those J ohn Stossel, co-anchor of 20/20, is one of the most recognized and articulate reporters today. However, he once considered giving up hisnumbers are sure to increase broadcasting career becausethanks to Google Grants. TM of his stuttering. The online search engine se- Stossel didnt quit, and thislected the Foundation to receive year he joins the Stuttering free Web ads that Foundation in recognizing The SFA appear when an Stuttering Awareness Week, Web site Internet user May 8 - 14, and celebrating had searches for specif- the Foundation’s 59th year 1,606,472 ic key words relat- of helping those who stutter. ed to stuttering. “Fear of stuttering can hits in The ads link the easily become worse than March Web user to the the stuttering itself,” ob- alone. Foundation’s site. served Stossel. “The idea In announcing that I’m on televisionthe grant, Google wrote, “After TM and making speeches iscareful review of all the appli- still a shock to mecations we received, we chose sometimes.”your group based on the During Stutteringstrength of your application. Awareness Week, theWe’re excited to be able to help John Stossel’s Emmy Award-winning re-you reach your target audience new book will porter and SFA will workwith public service messages.” be released to educate Americans during Stuttering about this little under- The Stuttering Foundation Awareness Weekwas chosen because of its stood speech disorder“strong mission to help the Continued on page 4world in the area of education andglobal public health.” Since it was launched in 1997, Did You Know? many males as females.the Web site has been an essential National Stuttering Awareness Week was People who stutter are as intelligent andtool in helping the Foundation ful- passed by a Joint Resolution of Congress well-adjusted as non-stutterers. in May 1988. People who stutter often have excellentfill its mission of providing re- Over three million Americans stutter. communication skills. John Stossel is a greatsources and educating the public Stuttering affects three to four times as example.about stuttering. ❑ Index PSAs hit the airwaves nationwide Tiger Woods speaks Stuttering Awareness Week started Mary J. Atkins, promotions, PSA out on stuttering . . . . . . . . . . . . 3 early this year when radio sta- and community calendar coor- Genetics studies in Pakistan . . . 5 tions around the country began HELP FOR STUTTERING Radio Public dinator with Clear Channel running 15- and 30-second Service Announcements radio stations in Bozeman, Public service ads hit a home run 5 public service announcements Mont., said, “Your press kit 1-800-992-9392 Genetics of stuttering . . . . . . . . 2 narrated by John Stossel. looked so good! I have al- Survey on stuttering in The PSAs were distributed THE STUTTERING FOUNDATION ready sent them to produc- the workplace . . . . . . . . . . . . . . 6 to 2,618 radio stations across tion to be added into our rota- State conventions are hot . . . . . 7 the country in time for Stuttering tion,” she said. Kids respond. . . . . . . . . . . . . . . 8 Awareness Week, which begins You can hear the the radio PSA at May 8. www.stutteringhelp.org. ❑
    • 2 www.stutteringhelp.org 1-800-992-9392Genetics of stuttering: New developmentsBy Ehud Yairi, Ph.D. ing are brighten. The Illinois groupUniversity of Illinois later concluded that a mixed model, For a long period, information on incorporating SML, polygenic com-the familiality of stuttering was pri- ponents (many other genes), as wellmarily based on data concerning the as environmental factors, had the bestpercent of people who stutter having fit (Ambrose, et al. 1997).relatives with his- Furthermore, they showed that nottories of stutter- only does the initial expression ofing. This figurehas varied from stuttering have strong genetic compo-20% to 74%. nents but also its future developmen- Charles and Katy Van Riper on their wedding day.Although it is ap- tal course. That is, children who stut-parent that stutter-ing runs in fami- ter and have a familial history of chronic stuttering would tend to fol- Speech pioneerlies, this fact, in-and-by itself, is in- low that same pattern. And vice versa, children who stutter but have a famil- remembered Ehud Yairi, Ph.D. Catherine Jane Hull Van Riper issufficient to con- ial history of naturally recovered stut- her full name, but most rememberclude genetic un- tering, would tend to follow that pat- her simply as Katy.derlining. After all, a good number of tern. Another significant contribution Jane Fraser, president of thetendencies, e.g., religious and politi- was made by twin studies that consis- Stuttering Foundation spoke aboutcal affiliations, also run in families. tently demonstrated considerably her on Nov. 20 during a forum on As research methods improved, higher concordance levels of stutter- early pioneers in the field of speechfamily pedigrees (trees) were ana- ing in identical than in non-identical at the ASHA convention in Sanlyzed in detail to study the occurrence Diego, Calif.of stuttering in different classes of rel- twin pairs (e.g., Howie, 1981; Felsenfeld, et al., 2000). While many know Katy’s husband,atives: mothers, fathers, sisters, and the late Dr. Charles Van Riper, was abrothers, taking into account family The accumulated findings justified a move from behavioral and statistical pioneer in the field of stuttering, lesssize, something that was overlooked is known publicly about Katy, whoin the past. Obviously, a family of 12 genetics into biological genetics. Typically, the first phase in such re- was also a pioneer in her own right.with one member who stutters pre- “She was the first woman to gradu-sents a very different picture than a search is linkage analysis aimed at identifying the general location of pos- ate in the field of speech pathology atfamily of 4 with one who stutters. the University of Iowa,” Fraser said.Using sophisticated computer pro- sible genes using DNA extracted from samples of body tissues. Then, forms While Katy was the valedictoriangrams (e.g., segregation analysis), in- of her high school class and graduat-vestigators evaluated the transmission of known marker genes are identified on every chromosome (or just chro- ed from the University of Iowa, sheof stuttering by matching the disor- was turned down for a job on her firstder’s familial distribution against sev- mosomes of interest). When a marker gene form is co-inherited with stutter- interview. “You are too young,” sheeral possible genetic was told.models. They were suc- ing (linkage), the indica- tion is that the gene con- She later found work at a newcessful in showing that a tributing to stuttering is speech clinic started by Bryngfew alternative models on the same chromo- Bryngelson at the University ofprovided a good fit. some as the marker Minnesota.Professor Kenneth Kidd gene; in fact, very close “To be on faculty of a major uni-of Yale University and to it. versity with only a B.A. degree washis team made an enor- At the beginning of unheard of at the time. Especially formous contribution in this the current millennium, a woman,” wrote her husband in a bi-respect, e.g., Kidd, et al. Nancy Cox (2000) reported the results ography years later.(1978) and Cox, et al. (1984). (For a of the first complete standard Katy taught many of Dr.more comprehensive review, see genome-wide screen of DNA markers Bryngelson’s classes, helped himYairi, et al., 1996). for analysis of stuttering for members with his research, and edited his pro- Approximately 13 years ago, of the Hutterite population in North fessional articles.Ambrose, et al. (1993) at the Dakota. In this ground-breaking “It was the perfect job for me,University of Illinois were the first to study, areas in chromosomes 1, 3, 5, 9, with new challenges every day,”report statistically significant evi- 13, and 15 had evidence for linkage of she later wrote. Her salary wasdence for a Mendelian single major stuttering. Since then, four additional $1,200 a year.locus model (SML) which assumes promising genome-wide linkage stud- Katy died in 1984 after a longthat there is one, or several major ies have identified several chromoso- battle with cancer.genes responsible for stuttering. mal regions that appear to be associat- “Many of you will remember herViswanath et al., also supported this ed with stuttering. Shugart et al. for the warmth and caring she gave tofinding. If correct, then chances for (2004) reported a modest signal for a all whom she touched” her husbandidentifying genes underlying stutter- Continued on page 6 wrote after her passing. ❑
    • SUMMER 2006 1-800-992-9392 3100 years young! Tiger wins at golf After 100 years, EdwardRondthaler has his routine down. He — and stutteringwrites a weekly column for his local Top-ranked golfer Tiger Woodsnewspaper, walks each morning, does tells CBS’s 60 Minutes that it takeshis own errands, and regularly helps hard work and a competitive spiritothers — including the Stuttering to overcome childhood stuttering.Foundation. In fact, other than the “The words got lost, you know,Foundation’s founder Malcolm somewhere between the brain andFraser, Rondthaler was the first major the mouth. And itcontributor to the organization. At 100 years old, Edward Rondthaler contin- was very difficult, Staying busy keeps Rondthaler in ues to support causes important to him such but I foughtgreat shape. as the Stuttering Foundation. through it. I went to “Being 100 feels like being a year a school to try andolder than 99,” he says. “200 is pretty magazine. Clearly, speech correction get over that, and Iold, but 100 is not.” has at last risen above quackery, and just would work On Nov. 23, 1981, Rondthaler in- I’m sure that your foundation has my tail off,” Woodscluded a $1,000 contribution with a had much to do with that...” told the news pro- Woodsletter he wrote to the then Speech Rondthaler says he gives to the gram in April.Foundation of America. SFA because “it completely “The parallels between speech His letter said, “It is with this changed my life for the good.” performance and sports perfor-enormous pleasure that I send you In fact, he says he’s always rec- mance are striking,” said Janethis check for a thousand dollars. ommending that others who stutter Fraser, president of the StutteringTwo weeks ago I received your contact the SFA. Foundation, “and Tiger Woods isbook Self-Therapy for the Stutterer “I have recommended it to so the latest example of how the manyand have read it with amazement. many people. I’m so happy to sup- hours of practice and hard work toEvery word in it rings true. And I port it in any way I can,” win in sports are no different fromspeak from a lifetime of experience Rondthaler says. “I even give out those long hours spent in therapy... Today at 76, the severity is much, copies of Malcolm’s book.” for stuttering.”much less, and for half of my life In 1970, Rondthaler co-founded NBA Hall of Famer and sportsstammering has been more of an in- the International Typeface commentator Bill Walton dealt withconvenience than a handicap. What Corporation — an international stuttering just like he did basketball.excites me is that at least someone leader in typeface design and mar- “I thought about the fundamentalshas gotten to the root of the trouble keting. ITC collaborates with of the game and how to start withand can write about it in an under- world-class designers to provide a the basics like the ability to me-standing, lucid way.” library of over 1,650 classic type- chanically duplicate moves on a He continues, “When I was a boy, faces and innovative new designs. basketball court. And then I just ap-there were many young stammerers. In 1975, he was awarded the TDC plied that to speaking.”There seem to be fewer now, and for Medal, the award from the Type Chicago Bulls’ legend Bob Lovea long time I had been wondering Directors Club presented to those notes that “countless hours of workwhy. It’s been a long time since I’ve “who have made significant contri- taught me to manage moments ofseen the little ads that Bogue and butions to the life, art, and craft of difficult speech.”others used to have in almost every typography.” ❑ In a recent interview, Denver Nuggets’ star Kenyon Martin said of his stuttering, “How I got Annual Audit of Foundation through it was just by working hard The annual audit of the Stuttering Foundation fi- The 3.8% of expenditures for administration and nancial reports for 2005 was recently completed by general expenses and the 6/10 of 1% for fund raising at it.” the accounting firm of Cannon and Company, are very low, and since we are fortunate to have an en- U.S. Open golf champion Ken Certified Public Accountants, Memphis, Tenn. dowment which more than covers our overhead ex- Venturi adds, “I have had to work Following is a recap of funds and expenditures for penses, donors can be assured that their gifts will go the year. directly to support our program services. through the years to overcome stut- Funds expended for: tering and to speak more easily and Creation, production, printing and distribution fluently.” Venturi compares moving of educational materials . . . . . . . . . . . . . . .. . . . . . . . . $554,564 . . . . .46.3% smoothly through speech to moving Public information and education . . . . . . . . . . . . . . . . . . . . . . . . 312,247 . . . . . 26.1% gracefully through a golf stroke. Educational symposia for professionals and research . . . . . . . . .201,355 . . . . . 16.8% “Tiger Woods is the perfect role Maintain Web site and toll-free stuttering information hotline. . . . . 76,086 . . . . . . 6.4% Total for Program Services: . . . . . . . . . . . . . . . . . . . . . . . . .$1,144,251 . . . . .95.6% model for all school-age children Other expenditures: who struggle with this complex Administration and general . . . . . . . . . . . . . . . . . . . . . . . . 45,524 . . . . . . 3.8% disorder,” said Fraser. The Fund-raising expense . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7,627 . . . . . . 0.6% Foundation offers free resources at Total Expenditures: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . $1,197,402 . . . . . .100% www.stutteringhelp.org where The Stuttering Foundation of America is a private operating foundation which expends its funds on its own programs and does not make grants to other institutions. Tiger joins a long list of celebrities who stutter. ❑
    • 4 www.stutteringhelp.org 1-800-992-9392Stossel Continued from front page my newly found fluency.” Stossel is aware of the need forthat affects more than three million continued practice. “Immediatelypeople in the United States. after going through intensive treat- Stossel has also chosen Stuttering ment, I remember having the attitudeAw a r e n e s s that I’d neverWeek to release have a stutter-his newest book ing problemMyths, Lies and again, and thenDownright the crushingStupidity: Get disappointmentOut the Shovel when I did,” he— Why notes. “I had to June Campbell answers questions at the SFAEverything You booth in March during the National Association of constantly re- Pediatric Nurse Practitioner’s Annual ConferenceKnow Is Wrong. mind myself to in Washington, D.C. Stossel’s keep practic-childhood andthe early part ing.” adults Many who Pediatric nursesof his careerwere fraught stutter must re- member to on the front linewith the diffi- practice speech Pediatric nurse practitioners are fre-culties of stut- therapy tech- quently the first medical professionalstering. “I re- niques in order with whom parents interact regardingmember terror John on the set at 20/20. to stay on top the well-being of their children.in the class- of their fluency. These dedicated professionalsroom,” Stossel said. “In “We are thrilled to proved they are perfect resources tomy early days as a re- have as our support parents with questions aboutporter, I did regular spokesperson some- stuttering as illustrated by their inter-live 30-second seg- one who has brought actions with June and Allenments with the anchor important issues and Campbell at the National Associationof the news program; I news-breaking topics of Pediatric Nurse Practitioner’swoke up every morn- to the nation’s atten- Annual Conference in Washington,ing in fear of that. D.C. in late March.The fear stayed with tion through his Nurse practitioners from aroundme all day long.” broadcast voice,” said the country flocked to the Stuttering He considered quit- Jane Fraser, president Foundation Exhibit Booth to obtainting but, fortunately, of the Stuttering literature, ask questions and discusssought speech therapy Foundation. “Mr. specific cases.first. “Once I began Stossel did not let stut- A frequent topic of discussionto see the results of tering silence his story, was educating parents regardingtreatment, I was like and we hope that how to best interact with disfluenta cork out of a bot- through his success and preschoolers.tle,” he said. “I started John Stossel’s new book will hard work, others will Nurses were thrilled to learntalking all the time, be released during Stuttering find encouragement to about the expanded Web site andcelebrating and testing Awareness Week. deal with theirs.” ❑ DVD formatted films as well as available pamphlets and books in English and Spanish. The nurse practitioners represent- ed diverse work settings includingWedding gifts that help children private practices, clinics, schools, and a variety of hospital depart- Some supporters are helping the the charity of their choice. ments including acute care, oncolo-Foundation by saying “I do.” Fortunately, the Stuttering Foundation gy, neurology, and extended care. ❑ Thanks to the I Do Foundation, figures among those lucky enough tothe SFA has re- be chosen.ceived donations The organiza-from brides and tion also partners The Stuttering Foundation of America is a tax-exemptgrooms across the with stores and organization under section 501(c)(3) of the Internal honeymoon des- Revenue Code and is classified as a private operatingcountry. foundation as defined in section 4942(j)(3). Charitable The SFA uses these funds for its tinations that contribute a portion contributions and bequests to the Foundation are tax-many projects, including helping to charity. deductible, subject to limitations under the Code.children who stutter. To participate or for more informa- THE The I Do Foundation allows cou- tion, contact SFA at 1-800-992-9392 STUTTERINGples to request that guests donate to or visit www.stutteringhelp.org. ❑ FOUNDATION
    • SUMMER 2006 1-800-992-9392 5New light on genetic factorsBy Dennis Drayna, Ph.D. Drayna, a leader of the NIH PSAs hitNIDCD Studies in Pakistan over the past study. “While we have not yet identified this gene on chromo- a home runfew years have some 12, we know where to look, The Stuttering Foundation’s pub-added new impetus and we’re optimistic that we’ll lic service ads (PSAs) are scoringto research on ge- see rapid progress in the coming big this year thanksnetic factors in stut- year,” said Dr. Drayna. to the many nationaltering. Research at The work was carried out at the publications thatthe National National Institute on Deafness provide space.Institutes of Health and Other Communication For the first time,has recently identi- Disorders, in collaboration with ESPN ran PSAs and itfied a specific loca- scientists at the University of was a double play!tion for a gene that Chicago and the Centre of The magazine ran two Dennis Drayna, Ph.D.seems to be an im- Excellence in Molecular Biology ads in the April 10thportant contributor at the University of the Punjab, in edition. One was a Full-page PSAto stuttering in this population. Lahore, Pakistan. full-page PSA and the used by ESPN.Scientists have found that this gene re- Finding a gene alteration that other was an ad featuring NBA Allsides on chromosome 12, which pro- causes stuttering is of great inter- Star and Hall of Famer Bill Walton.vides a start to identifying the gene it- est, as it may help shed light on the The Foundation makes several ver-self. These results were recently pub- underlying causes involved. Of sions of PSAs availablelished in the American Journal of particular interest will be what the to magazines andHuman Genetics, a leading scientific gene codes for, and how it acts, newspapers.journal. both in stutterers and in normally Among those fea- Like elsewhere in the world, fluent individuals. tured in PSAs arestuttering in Pakistan appears to “Even finding one gene is un- 20/20 co-anchorcome from both genetic and non- likely to be the whole story.” cau- John Stossel, con-genetic causes. Although stutter- tioned Dr. Drayna, who empha- servationist Alaning does not seem to occur at a sized that it’s likely there will be Rabinowitz,higher rate in the Pakistani popu- other genes, as well as non-genet- Winston Churchill,lation overall, it often occurs in ic factors involved in stuttering. Buffy the Vampirelarge family clusters. This may be “But we’d be delighted to have Slayer star Nickdue to traditional marriage pat- one gene to study to get us started Brendon, legendaryterns that have existed in Pakistan on understanding the bigger pic- basketball star Bobfor many generations, in which ture.” he said. Love, Annie Glenn,marriage between cousins is con- Reference: and country musicsidered highly desirable. Riaz, N., Steinberg S., Ahmad, J., star Mel Tillis. The “We are fortunate to have won- Pluzhnikov, A., Raizuddin, S., Cox, N., and Nick Brendon ad isderful cooperation from the many D. Drayna. Genomewide significant linkage to stuttering on chromosome 12. American also produced inPakistani families involved in Journal of Human Genetics. 76:647-651 Spanish.this study.” said Dr. Dennis (2005) ❑ In addition to ESPN magazine, PSAs so far this year have appearedEarly stuttering treatment crucial in Time, Forbes, Dr. Tricia Zebrowski of the Redbook, Seventeen,University of Iowa was featured on Golf Digest,TV stations around the country dis- Prevention, Town &cussing the importance of early inter- Country, Porthole,vention for children who stutter. Black Enterprise, Since the segment first ran in House Beautiful,December, many more stations have American Medicalaired the report, including the CBS News, JAMA,station in Green Bay, Wis., the NBC Georgia Trend,station in Omaha, Neb., and the ABC Parents, Penthouse,station in Creve Coeur, Ill. stutters. Northshore, Alabama The report tells viewers, “There’s Many stations airing the segment Living, and others — which have ano miracle cure for stuttering. It’s include a link to the Foundation’s combined circulation of more than 12best to evaluate a problem early.” Web site, www.stutteringhelp.org. million readers. The segment features Zebrowski And some include a way for viewers Next time you pick up a magazine,working with a 7-year-old boy who to e-mail the article to others. ❑ be on the lookout. ❑
    • 6 www.stutteringhelp.org 1-800-992-9392Stuttering may make a difference at work A newly released survey by The Foundation offers an updatedProfessor Marshall Rice of the brochure, Stuttering: Answers forSchulich School of Business at York Employers to help dispel these in-University, Toronto, correct assumptions.found 51 percent of re- The survey of 566 people whospondents — all of stutter from 37 countries alsowhom stutter — believe found 42 percent felt a job inter-they would have a better view was “cut short.” Fourteen per-job if they didn’t stutter. cent said an employer told them di- Sixty-eight percent of rectly that they would not be hiredthose surveyed agreed Rice for a position because of their stut-with the statement: “I tering. Sixty-one percent agreed Frances Cook, Barry Guitar, Jane Fraserbelieve my capabilities, at times, with the statement, “I feel I have to (front row), Carroll Guitar, Peter Ramig, Lisahave been misjudged by my supervi- be ‘better’ than fluent speakers in Scott and Patricia Zebrowski are creating a new DVD called Stuttering: A Demonstrationsors because of my stuttering.” order to have the same opportuni- of Basic Techniques and Clinical Skills. “The results point to the need to ties for employment.” Forty-four percent indicated they It will be a comprehensive first course in stut-further educate employers about stut- tering therapy including fluency shaping andtering,” Dr. Rice said. “Clearly, some were currently a member of a stutter- stuttering modification techniques. Startingemployers do not understand stutter- ing support group. Fifty-nine percent with the basics — how we talk, how we stuttering and make incorrect assumptions said they have been a member of a — clinicians will then be taught techniques,about the abilities of their employees support group at one time. such as soft starts, changing rate, in block cor-who stutter. This misunderstanding The largest number of responses rections or pull-outs, and more. The DVD willresults in reduced employment and came from the United States, Britain, be accompanied by a learner’s manual and will be available for ASHA CEUs.promotion opportunities.” Canada, Australia and India. ❑Genetics Continued from page two on chromosome 7. The region on References Ambrose, N.G., Yairi, E., & Cox, N. (1993). Chromosome 12 is very close to that Genetic aspects of early childhood stuttering. Journalstuttering locus on chromosome 18 reported signal by Riaze and col- of Speech and Hearing Research, 36, 701-706.and Riaz et al. (2005), using Pakistani leagues for the Pakistani families. Ambrose, N.G., Cox, N.J., & Yairi, E. (1997). The genetic basis of persistence andfamilies, found a strong linkage signal Second, a region on chromosome 2 recovery in stuttering. Journal of Speech,on chromosome 12. An NIH team showed a significant increased link- Language, and Hearing Research, 40, 567-580. Cox, N., Kramer, P., & Kidd, K. (1984).under the leadership of Dr. Drayna age signal for families who had high Segregation analyses of stuttering. Geneticstudied stuttering in a large Cameroon linkage signal chromosome 9 or neg- Epidemiology, 1, 245-253.family and reported a modest evi- Cox, N. (2000). Genetics of stuttering: Insightsdence for linkage on chromosome 1 ative signal on chromosome 7. and recent advances. Presented at the annual na- tional convention of the American Speech-(Levis, et al., (2004). Incidentally, the region on chromo- Language-Hearing Association. Washington, D.C. The largest and most recent study some 2 has been implicated in recent Felsenfeld, S., Kirk, K.M., Zhu, G., Statham, D.J., studies of autism. We have speculat- Neale, M.C. & Martin, N.G. (2000). A study of the ge-on linkage mapping was conducted netic and environmental etiology of stuttering in a se-by the Illinois International ed that such gene interactions may lected twin sample. Behavioral Genetics, 30, 359-366. provide better insight into stuttering Howie, P. M. (1981). Concordance for stutteringGenetics of Stuttering Project under in monozygotic and dizygotic twin pairs. Journalthe leadership of Professor Nancy sub-types. of Speech and Hearing Research, 24, 317-21. Although it is too early to specu- Kidd, K.K., Kidd, J.R., & Records, M. (1978). TheCox, University of Chicago, using possible causes of the sex ratio in stuttering and its im-blood samples from families in the late on what genes might be in- plications. Journal of Fluency Disorders, 3, 13-23.USA, Sweden, and Israel. Our team volved, it appears that the genes in Levis, B., Ricci, D., Lukong, J., & Drayna, D. (2004). Genetic linkage studies in a largeidentified moderate evidence for the different chromosomes are sim- West African kindred. American Journal oflinkage for the broad category of ilar, having some evolutionary ho- Human Genetics, 75, S2026. mology. This might be consistent Riaz, N., Steinberg, S., Ahmad, J., Pluzhnikov,“ever-stuttered” (including both A., Riazuddin, S., & Cox, N.J., et al. with the possibility that related (2005). Genomewide significant linkage to stutter-persistent and recovered stuttering) genes affect susceptibility to stut- ing on chromosome 12. American Journal ofon chromosome 9 whereas for per- tering. In summary, we have ad- Human Genetics, 76, 647-651.sistent stuttering only it was on Shugart, Y.Y., Mundorff, J., Kilshaw, J., Doheny vanced from simplistic casual ob- K., Doan, B., Wanyee, J., et al. (2004). Results of achromosome 15. The strongest sig- servations that stuttering runs in genome-wide linkage scan for stuttering. Americannal for males only appeared on families, arriving now at a point Journal of Medical Genetics A, 124, 133-5. Suresh, R., Roe, C., Pluzhnikov, A., Wittke-chromosome 7 and for females only where we are within arm’s reach of Thompson, J., C-Y Ng, M., Cook, E., Lundstrom,on chromosome 21. identifying the specific gene, or C., Garsten, M., Ezrati, R., Yairi, E., Ambrose, N., & Cox, N. (2006). New Complexities in the Genetics Also very interesting, further anal- genes, underlying stuttering. One of Stuttering: Significant Sex-specific Linkageyses revealed two possible genetic has to keep in mind, however, that Signals. American Journal of Human Genetics. Viswanath, N., Lee, H., & Chakraborty, R. (2004)routs to stuttering. First, there was a appreciable portions of the avail- Evidence for a major gene influence on persistent de-significant increase in the evidence able evidence have consistently as- velopmental stuttering. , 76, 401-12. Human Biology Yairi, E., Ambrose, N. & Cox, N. (1996).for linkage on chromosome 12 for signed significant roles to non- Genetics of stuttering: a critical review. Journal offamilies who had high linkage signal shared environmental factors. Speech and Hearing Research, 39, 771-84. ❑
    • SUMMER 2006 1-800-992-9392 7Carol Ecke shows a new workbook to CSHA Jennifer Watson, Carol Ecke and Russ HicksPresident Tricia Chambers during the smile about the great materials during the Tricia Krauss-Lehrman, Carol Ecke andCalifornia convention. 2006 Texas convention! Sheila Patterson in Texas. • Great Falls •cross Am Bellingham AA eri Atlantic •• •ca • City F Rosemont Indy S • • • San Francisco Kansas City Columbus LouisvilleKristin Chmela and Mary Mantilla ••Fullerton San Diego • Myrtle Beach The Stuttering Foundation booth was the first booth you saw as yougive helpful tips in Illinois. Carol Ecke makes an • • • Grapevine New Orleans Austin walked in the door in Texas 2006. impact wherever she goes Nationwide tour is If you’ve been to a state conven- not had the opportunity to actually look tion recently, chances are you’ve through the materials and see the probably visited the Stuttering DVDs. They are totally thrilled when Foundation’s booth and consulted they examine the materials,” Ecke says. with Carol Ecke, a Board Recognized “I also view my role as a teachingTom Chmela keeps things Specialist in Fluency Disorders. opportunity for each individual I TCU students’ smiles bringmoving! Ecke travels from coast to coast to meet,” Ecke explains. SLPs to the booth. work the SFA booth several times “Carol is our eyes and ears in the each year — reaching more than field,” says Jane Fraser, president of 27,500 people. the Foundation. “Ideas for new books, Ecke, a speech-language patholo- videos, brochures and other products gist herself, is able to answer ques- often come from the feedback we re- tions, suggest specific publications, ceive at these conventions.” and offer advice. Recently, she has been in San Diego, After each convention, she pro- Fullerton and San Francisco, Calif.; vides feedback about products and Rosemont, Ill.; Bellingham, Wash.; comments from attendees. These Great Falls, Mont.; Atlantic City, N.J.; suggestions are then used to update New Orleans, La.; Indianapolis, Ind.; materials and inspire new directions. Kansas City, Kan.; Louisville, Ky.; Volunteer SLP LonnieJudy Martin and Carol “I really enjoy traveling to the states Myrtle Beach, S.C.; Columbus, Ohio; Harris helps out inEcke greet SLPs in Myrtle and meeting the therapists who have and Austin and Grapevine, Texas. ❑ Louisville.Beach.Judy Martin got to meet some of her on-line students at the SFA booth. This table in Ohio is set for SLPs. Carol Ecke tries a new angle in Louisville!
    • 8 www.stutteringhelp.org 1-800-992-9392 Dear SFA: Reader Response Send letters to SFA, P.O. Box 11749, Memphis, TN 38111-0749 or email info@stutteringhelp.org.Teachers check out DVD No one is perfect “slow down.” I usually stutter whenDear SFA: Hello: I’m excited, interrupted, or trying toThank you for sending our school I am 11 years old. My stuttering say something fast. I usually talk fast.the free DVD and handbook about needs just a little bit of improve- Some kids laugh at my stuttering andstuttering in response to our request. ment. I am fine with my stuttering. my sister thinks my stuttering is cute.Our teachers are already checking I understand that I’m not perfect By my stuttering teacher says it’s OKthem out of the library to learn how and no one else is either. to stutter, and it’s part of me and nowto help their individual students Prince, 11 I’m used to it.more effectively. Boston PaulSue Cusey New York CityLibrary Technician Films such asBreeze Hill Elementary School Stuttering and Seeking help from othersVista, Calif. Your Child: Dear SFA: Help for In your summer 2005 newsletter, ISpeech is getting easier Parents are read the letter that was sent in by a 15-Dear SFA: now available year-old in Atlanta. I was touched byI’m a 7-year-old who stutters. I free as his letter and could really understand streaming where he was coming from. I am 21enjoy video games, swimming and video onlineacting. Sometimes stuttering bothers years old and have been stuttering my at www.stutteringhelp.org.me and sometimes it doesn’t. When entire life. It’s been an uphill battle,it bothers me, I get mad and walk but it was nice knowing that I wasn’tout of the room to catch a breath. I the only person in the world facingsee a speech therapist who helps me Nurses send thanks this challenge, even when in my hard-talk easier. I like working with her. Dear SFA: est moments I felt alone. I wish I hadThanks for reading my story. The New York State Association of thought to go to your Web site sooner.Noah, 7 School Nurses would like to thank High school and college have beenCharleston, S.C. you for your literature, brochures, another challenge. I live in a rural and samples your organization gen- area, and many of my professors had-Overcoming teasing erously donated for the New York n’t encountered someone with aHello: State School Nurse Orientation. speech impediment and would ask meMy name is James and this is my This information was given to new what I would like to do when the timestory. When I was about 7 years old, school nurses throughout the state. came for me to give an oral presenta-I got picked on about my stuttering. Thank you again in helping school tion. I was torn between receiving spe-Sometimes I used to cry when I got nurses add to their resource infor- cial treatment and participating likepicked on. Then when I was 9, I mation to share with students, staff the rest of the my class. I taught my-started to get over people picking and parents. self different ways to work around myon me. Then when I was 10, which Barbara Weingart, RN, NCSN speech, but I’d always wished thereis now, I am a master at ignoring Westfield Central School was a way for people who stutter topeople who make fun of me. Westfield, N.Y. share their experiences and help eachJames,10 other out. So that’s why I decided toKannapolis, N.C. Speaking can be hard write. Maybe there could be come Hi: kind of way for everyone to commu-‘I wish people understood’ I’m Nick. Usually people just want nicate and share their experience,Dear SFA: to know if stuttering is hard for me. whether it’s on what to do whenMy name is Martina and I’m 12 Some people even tease me about it. someone teases you, talking on theyears old. A lot of people in my I hate it when people tease me. phone, or how to give an oral presen-class tease me about my stuttering. When I’m mad about stuttering, I tation or what to do on a job interview.When I ask someone a question, I go up to my room and talk to my I know that you may already have re-get very nervous before I ask them stuffed animals. sources for this, but I felt it was some-because I’m afraid I’m going to Nick thing that could help others.stutter. A cashier looked at me like I New York City Kathleenwas crazy. I wish it would just go E-mailaway, and I wish people understood Stuttering is ‘part of me’my problem. When people make Hi: Editor’s note: The SFA providesfun of me, I just cry. I’m Paul. I don’t like stuttering be- many resources, including theMartina, 12 cause whenever I stutter, people tease brochures Using the Telephone: ANew York City me by saying, “da, da, da, da” or Continued on page 9
    • SUMMER 2006 1-800-992-9392 9Letters Continued from page 8 Book is just what the doctor orderedGuide for Those Who Stutter, The Child Who Stutters: To the Pediatrician with my report in theStuttering: Answers for Employers, Pediatrician is reaching new audi- hope that I will educate their pediatri-which address interviewing, and Notes ences worldwide. cian about early childhood stuttering.”to the Teacher, which discusses teasing This 16-page publica- She continues, “I really do believeand speaking in class. These brochures tion is new in its 3rd the publication and feedback fromare available to download for free at edition, updated recent- parents have changed the practiceswww.stutteringhelp.org or order by ly by Dr. Barry Guitar. of many pediatricians regardingcalling 1-800-992-9392. Adriana DiGrande, a early childhood disfluency.” speech-language pathol- The book also includes a convenient ogist in the Boston area, DiGrande referral checklist and can be ordered shares, “Whenever I by calling 1-800-992-9392. Or down- write up an evaluation on a preschool- load it at www.stutteringhelp.org. Just er, I always send along a copy of The click on the “Pediatricians/Physicians” Child Who Stutters: To The tab on the left. ❑ Celebrity Corner Cuban author frequentlySend us more!Hi:I work for the Thief River Falls wrote about stuttering I n June 1998, the English-speaking the onset of the Castro regime only toPublic Library in Thief River Falls, find himself a target of attacks by gov-Minn. I received one of your DVDs world was introduced for the first time to Cuban writer Calvert ernment agents. Another quirky story istitled, Stuttering: For Kids, By Kids. The Execution in which a man is sen-I would like to get three more copies Casey, who had died in 1969 at the age of 45. Well known in the world of tenced to death for a crime he did notfor other branches. commit and never refutes the charges.Heidi Latin American litera- ture, 1998 marked the Casey was in exile during the lastThief River Falls, Minn. part of the Batista regime, where he first time that his com- plete works were trans- lived in New York and wrote maga-Student from Afghanistan lated into English and zine articles. Returning to Cuba whenHello: Fidel Castro took power, he wasMy name is Fahima and I am a girl published in one volume entitled Calvert Casey: prominent among the intelligentsiafrom Afghanistan. I live in California The Collected Stories. Casey surrounding Castro and wrote forand I am 11 years old. I have prob- Upon its publication, the following several government publications.lems with speech. I don’t like my was written in Publishers Weekly: However, he became totally disen-stuttering because it makes me feel “This volume is a fine overdue intro- chanted with the political situation inembarrassed. I go to a speech thera- duction to one of Communist Cuba’s Cuba and went into exile in Rome,pist. It’s fun to go to speech because most sophisticated writers.” where he wrote his famous novellamaybe it will help me talk better, and Calvert Casey was born in “Notes of a Simulator”.I play games with my speech thera- Baltimore in 1924 to an Irish- In 1969, struggling with personalpist. My teacher noticed my stuttering American father and a Cuban moth- issues as well as his severe stuttering,in class when I stuttered on the letter er, moving to Cuba as a small child. Casey took his own life; on his desk“T”. I always stutter on letters like His childhood was described by a he left open a Henry James book“T,” “S,” and “D.” I mostly sutter at friend as being “isolated from other with an underlined passage whichhome because I don’t control it. children because of his violent stutter.” read: “He was a man too fragile toAnyway, my family is used to my Other accounts attest that the sever- live in this world.”stuttering. I can control my stuttering ity of his stuttering continued into While Calvert Casey only wroteonly when I take a deep breath before adulthood. Friends and critics alike one novella and sixteen short storiesI start to talk, and maybe there are credit his stuttering for his developing in his career, he is well known insome other ways I can control it. I characters in his writing that are up- Latin American literary circles; iron-hate my stuttering. I am not the only rooted, disenchanted and alienated. ically, he remains ignored by theone who stutters in my family. My In the New York Times book re- Cuban literary establishment.brother (17) and my sister (16) stutter view, James Polk wrote, “Casey He frequently mentioned stutteringtoo. Their stuttering is even worse writes from the shadows with cer- in his writing as he struggled with itthan mine because they don’t know tainty and fluent assurance of one every day of his life.how to control it. Sometimes my stut- who knows them well.” With the publication of his workstering gets so bad I can’t control it. I His most famous short story is The in English it is hopeful his writingfeel very embarrassed at that time. Homecoming, which is about a person will receive the same recognition inFahima who severely stuttered who enthusiasti- the English-speaking world that itEl Cajon, CA ❑ cally returns to his beloved Cuba during has received in Latin America. ❑
    • 12 www.stutteringhelp.org 1-800-992-9392NEWSBRIEFS The Stuttering Foundation two-day con- ference for speech-language pathologists Books on Stuttering or Related Topics Available from Bookstores: lustrations by Karen Ritz. A book for children ages 5-9. Albert Whitman & Co., Morton Grove, IL. 800- 255-7675. working with school-age children who stut- ter, Practical Ideas for the School Clinician, Sharing the Journey: Lessons from my Students Stuttering: An Integrated and Clients with Tangled Tongues by Lon Emerick, will be held on June 9 and 10, 2006, in the Approach to Its Nature and Ph.D., available from North Country Publishing, Chicago area. For an application form, call Treatment, Third Edition by Barry 355 Heidtman Road, Skandia, MI 49885, for $13.95 the Stuttering Foundation at 1-800-992-9392 plus $2 postage and handling, call toll-free 1-866- or check www.stutteringhelp.org. Guitar. 2006. Available from Lippincott, Williams & Wilkins, 942-7898; or from the Stuttering Foundation at 800- The Stuttering Foundation Five Day 992-9392. 800-638-3030, www.LWW.com Workshop, Diagnosis and Treatment of Living With Stuttering by Kenneth St. Louis, Stuttering Recovery Personal Children who Stutter: Practical Strategies, and Empirical Perspectives by Ph.D. Available from Populore Publishing will be held at Childrens Hospital of Dale F. Williams. 2006. Company, P.O. Box 4382, Morgantown, WV Philadelphia June 21-25, 2006. Workshop Available from Lawrence Erlbaum 26504, 304-599-3830. leaders are Joseph Donaher, M.A., Lisa Associates, Mahwah, NJ, www.erlbaum.com Stuttering: Its Nature, Diagnosis, and Treatment Scott, Ph.D., and Kristin Chmela, M.A. Speech Therapy for the Severe Older by Edward G. Conture, Ph.D., published by Allyn & Adolescent and Adult Stutterer: A Program for Bacon, Needham Heights, MA. (781) 433-8410. The Stuttering Foundation two-week Change by George Helliesen. 2006. Available Successful Stuttering Management Program, Workshop for Specialists will be held at the from Apollo Press, Newport News, VA, 800-683- Second Edition, by Dorvan Breitenfeldt, Ph.D., pub- University of Iowa, Iowa City, Iowa, during lished by EWU Press, Cheney, WA, (509) 235-6453.June and July, 2007, directed by Patricia Zebrowski, 9713, www.apollopress.com. The Child and Adolescent Stuttering Treatment Synergistic Stuttering Therapy: A HolisticPh.D. and Toni Cilek, M.A. Guest speakers to be an- Approach by Sister Charleen Bloom and Donna K. and Activity Resource Guide by Peter Ramig andnounced. This unique workshop brings together Cooperman. Published by Butterworth Heineman, Darrell Dodge. 2005. Available from Thomsonspeech-language pathologists from all over the world. Delmar Learning, Clifton Park, NY. Woburn, MA. The 9th Annual Convention of Friends will be Early Childhood Stuttering: For Clinicians by Stuttering Intervention: A Collaborative Journey toheld July 20-23, 2006, in Philadelphia, PA, at the Clinicians by Ehud Yairi and Nicoline Grinager Fluency Freedom by David Allen Shapiro, publishedEmbassy Suites Philadelphia Airport Hotel. For in- Ambrose. 2005. Available from ProEd, Austin, by Pro-Ed, Austin, Texas.formation and registration, visit www.friendswhos- TX and amazon.com. Tongue Wars by William H. Perkins, Ph.D.,tutter.org or call 866-866-8335. Begaiement: Intervention preventive precoce Athens Press, Los Angeles, CA, 800-551-2959. chez le jeune enfant by Anne Marie Simon et al. Clinical Decision Making in Fluency Disorders The International Fluency Association will hold the 2005. Available from the Association Parole by Walter H. Manning, Ph.D., published by5th World Congress on Fleuncy Disorder in Dublin, Begaiement, www.begaiement.org Singular/Thomson Learning.Ireland, July 25-28, 2006. Trinity College is the set- Nature and Treatment of Stuttering: Newting for this exciting international meeting. For more Teach Me How To Say It Right, Helping Your Child With Articulation Problems by Dorothy P. Directions by Richard F. Curlee, Ph.D. and Geraldinformation, visit www.theifa.org. M. Siegel, Ph.D., published by Allyn and Bacon, Dougherty, M.A. 2005. Published by New The NSA Annual Convention will be held June 28- Harbingers Publications, Oakland, CA. Available Needham Heights, MA.July 2, 2006, in Long Beach, CA, at the Westin Long at www.newharbinger.com. Straight Talk on Stuttering, Information,Beach Hotel. For more information and registration, Troy’s Amazing Universe, by S. Kennedy Tosten. Encouragement, and Counsel for Stutterers,call 800-937-8888. 2002. Published by Brite Press. Order from Caregivers, and Speech-Language Clinicians, 2nd For those wanting to purchase a poster entitled The www.TroysAmazingUniverse.com or amazon.com. edition by Lloyd M. Hulit, Ph.D. The publisher isBill of Rights and Responsibilities of PWS, contact A story about a seven year old who stutters. Charles C. Thomas, Springfield, Illinois. The Strong Silent Type, by C. Kelly Robinson. Le begaiement, option guerison by Francois LeMichael Sugarman at MSugarman1@aol.com. It rep- A gripping novel about a young NFL star coming Huche, M.D., Albin Michel, Paris, France, 1998.resents the combined effort of the IFA and ISA. to grips with his stuttering. Available from New Order from Albin Michel, 22, rue Huyghens, LISTSERV for doctoral students specializing in 75014 Paris. ❑stuttering. The intent of this list is to serve as an open American Library, New York, and www.ama- zon.com.forum for doctoral students. Membership is limited to Experiencias para compatir entre padres e hijosdoctoral students only. To subscribe, send the follow- by Karina Couselo Rios, Maria Marta Gebara anding message to “listserv@listserv.temple.edu: sub-scribe stutterdoc firstname lastname: or contact Joe Mariela Ginhson. equipfono_gcg@yahoo.com. Order from donationsDonaher at turtlecraw@aol.com. Our thanks to The Florida State Stuttering Therapy: Rationale and Procedures For those interested in joining Toastmasters by Hugo H. Gregory, June H. Campbell, Diane G. University and UniversityInternational as a way to improve fluency, communi- Hill, and Carolyn B. Gregory. Available from of Nebraska at Kearneycation or public speaking skills, their address is: Allyn and Bacon, Boston, MA; www.ablong- chapters of the NationalToastmasters International, Inc., Attention: man.com. 2003. Student Speech-Language-Membership Department, P.O. Box 9052, Mission Les begaiements: Histoire, psychologie, evalua- tion, varietes, traitements by Anne Van Hout and Hearing Association forViejo, CA 92690, Telephone: (714) 858-8255; Fax: Francoise Estienne. Published by Masson, S.A., their recent gifts to SFA.(714) 858-1207. For those wanting to obtain a copy of Self-Therapy 120 boulevard Saint Germain, 75280 Paris Cedex These generous gifts help children 06, France. who stutter. ❑for the Stutterer in Japanese, write to Dr. Shokichi Forty Years After Therapy: One Man’s Story byNakajima, 2-21-1 Ogawa Machida-shi, Tokyo 194, George Helliesen, M.A. Available from ApolloJapan, telephone/fax: 0427 (96) 5092. Press, Inc., 1-800-683-9713 or THE Self-Therapy for the Stutterer is available in French.Write to the Association des Begues du Canada, 2596 www.apollopress.com. Understanding Stuttering by Nathan Lavid. STUTTERINGA rue Chapleau, Montreal, Quebec, Canada, H2K 3H6;1-877-353-1042. Please enclose $20.00 Canadian to 2003. University Press of Mississippi, Jackson, MS. Order from bookstores or amazon.com. FOUNDATION Programmed Stuttering Therapy for Children A Nonprofit Organizationcover printing, postage, and handling costs. Since 1947 — Helping Those Who Stutter For those wanting to obtain a copy of Stuttering and and Adults by Bruce Ryan, Ph.D. Available through publisher Charles C. Thomas or online atYour Child: Questions and Answers in Hindi, write to: 3100 Walnut Grove Road, Suite 603 www.amazon.comDr. Sajiv Adlakha, Adlakha Speech and Hearing Clinic, P.O. Box 11749 ● Memphis, TN 38111-0749 Making a Difference for America’s Children:A67 Dayanand Colony, Lajpat Nagar - 4, New Dehli- SLPs in the Public Schools by Barbara Moore-110024, India, or e-mail: adlakhas@hotmail.com. Brown and Judy Montgomery. Available from 1-800-992-9392 ● 1-800-967-7700Those interested in joining a fluency and public speak- Thinking Publications, Eau Claire, WI. 715-832- www.stutteringhelp.org www.tartamudez.orging skills group should also contact Dr. Adlakha at the 2488. info@stutteringhelp.orgabove address. Ben Has Something To Say by Laurie Lears, il-