Summer newsletter 2010_online(2)

�THE STUTTERING FOUNDATIONSUMMER 2010

StarkweatherReceives

Malcolm FraserAward

C. Woodruff Starkweather,Ph.D., received the 2010Malcolm Fraser Award duringthe January meeting of theSpecial Interest Division forFluency and FluencyDisorders. Barbara Amster,Ph.D. made the followingaward presentation:

I was asked to give the high-lights of the awardee’s career.This is not an easy feat as hisCV is more than 25 pages long,but I will try to give you onlythe highlights.

Woody Starkweather is an in-dividual whose contributionsover more than 40 years havepromoted and enhanced publicand professional understandingof the nature of stuttering and itstreatment. He has demonstratedexcellence in the field of stutter-ing as a master teacher, advo-cate for people who stutter, andscholar/researcher. In the wordsof one of his nominators, “I be-lieve that he is one of only a fewpeople whose contributions tothe field of stuttering go beyonda listing of research, teaching,and service accomplishments.

Continued on page 6

Jean Gruss, grandson of SFAfounder Malcolm Fraser, andC. Woodruff Starkweather atthe award ceremony.

Byron Pitts of 60 Minutes Joins Famous People Poster for National Stuttering Awareness Week, May 10-16

The mystery behind a complexdisorder called stuttering becamea little clearer with the announce-ment of the discovery of threegenes for stuttering by DennisDrayna, Ph.D., a director of theStuttering Foundation and re-searcher for the National Instituteon Deafness and OtherCommunication Disorders.

“This research is important be-cause it’s another indication thatemotional factors such as anxietyor ‘bad parenting’ do not causestuttering. It could also point theway for a cure one day,” saysJane Fraser, president of theStuttering Foundation.

“We hear every day from par-ents worried that they havecaused their child’s stuttering.Parents don’t cause stuttering,and this research should lift theburden of guilt from their shoul-ders,” Fraser noted. “But becausea cure may be years away, speech

therapy and early interventionwith young children remain thebest option for now.”

“We have long known thatstuttering runs in families,” saysFraser. “We want to emphasizethat a genetic predisposition forstuttering does not mean a per-son will have a lifelong prob-lem. Early treatment in youngchildren can effectively preventstuttering.”

Developing an understandingof the biological basis of stutter-ing may someday lead to betterearly diagnosis, differentialtreatments for people with ge-netic indicators, and a better un-derstanding of how speech pro-duction happens differently forpeople who stutter. AlthoughDr. Drayna notes that his find-ings are unlikely to have anyimmediate impact on treatment,they nonetheless represent agiant step forward.

Researchers DiscoverFirst Genes for Stuttering

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Dennis Drayna, Ph.D., researcher for the National Institute on Deafness and OtherCommunication Disorders. See page 2 for the NIDCD press release.

Since 1947 ... Helping Those Who StutterA Nonprofit Organization

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Feb. 10, 2010 — Stuttering may bethe result of a glitch in the day-to-dayprocess by which cellular components inkey regions of the brain are brokendown and recycled, says a study in theFeb. 10 Online First issue of the NewEngland Journal of Medicine. Thestudy, led by researchers at the NationalInstitute on Deafness and OtherCommunication Disorders (NIDCD),part of the National Institutes of Health,has identified three genes as a source ofstuttering in volunteers in Pakistan, theUnited States, and England. Mutationsin two of the genes have already beenimplicated in other rare metabolic disor-ders also involved in cell recycling,while mutations in a third, closely relat-ed, gene have now been shown to be as-sociated for the first time with a disorderin humans.

“For hundreds of years, the causeof stuttering has remained a mysteryfor researchers and health care profes-sionals alike, not to mention peoplewho stutter and their families,” saidJames F. Battey, Jr., M.D., Ph.D., di-rector of the NIDCD. “This is the firststudy to pinpoint specific gene muta-tions as the potential cause of stutter-ing, a disorder that affects 3 millionAmericans, and by doing so, mightlead to a dramatic expansion in ouroptions for treatment.”

Stuttering is a speech disorder inwhich a person repeats or prolongssounds, syllables, or words, disruptingthe normal flow of speech. It canseverely hinder communication and aperson’s quality of life. Most childrenwho stutter will outgrow stuttering,although many do not; roughly 1 per-cent of adults stutter worldwide.

Stuttering tends to run in families,and researchers have long suspected agenetic component. Previous studiesof stuttering in a group of familiesfrom Pakistan had been done byDennis Drayna, Ph.D., a geneticistwith the NIDCD, which indicated aplace on chromosome 12 that waslikely to harbor a gene variant thatcaused this disorder.

In the latest research, Dr. Draynaand his team refined the location ofthis place on chromosome 12 andfocused their efforts on the newsite. They sequenced the genes sur-

rounding a new marker and identi-fied mutations in a gene known asGNPTAB in the affected familymembers. The GNPTAB gene iscarried by all higher animals, andhelps encode an enzyme that assistsin breaking down and recycling cel-lular components, a process thattakes place inside a cell structurecalled the lysosome.

They then analyzed the genes of123 Pakistani individuals who stut-ter—46 from the original families and77 who are unrelated—as well as 96unrelated Pakistanis who don’t stutter,and who served as controls.Individuals from the United States andEngland also took part in the study,270 who stutter and 276 who don’t.

The re-searchersf o u n dsome in-dividualswho stut-ter pos-

sessed the same mutation as that foundin the large Pakistani family. They alsoidentified three other mutations in theGNPTAB gene which showed up inseveral unrelated individuals who stut-ter but not in the controls.

GNPTAB encodes its enzyme withthe help of another gene calledGNPTG. In addition, a second en-zyme, called NAGPA, acts at the nextstep in this process. Together, theseenzymes make up the signalingmechanism that cells use to steer avariety of enzymes to the lysosome todo their work. Because of the closerelationship among the three genes inthis process, the GNPTG andNAGPA genes were the next logicalplace for the researchers to look forpossible mutations in people whostutter. Indeed, when they examinedthese two genes, they found muta-tions in individuals who stutter, butnot in control groups.

The GNPTAB and GNPTG geneshave already been tied to two seriousmetabolic diseases known as mucol-ipidosis (ML) II and III. MLII andMLIII are part of a group of diseasescalled lysosomal storage disordersbecause improperly recycled cellcomponents accumulate in the lyso-

some. Large deposits of these sub-stances ultimately cause joint, skele-tal system, heart, liver, and otherhealth problems as well as develop-mental problems in the brain. Theyare also known to cause problemswith speech.

“You might ask, why don’t peoplewith the stuttering mutations havemore serious complications? Whydon’t they have an ML disease?”posed Dr. Drayna, senior author of thepaper. “ML disorders are recessive.You need to have two copies of a de-fective gene in order to get the dis-ease. Nearly all of the unrelated indi-viduals in our study who stuttered hadonly one copy of the mutation. Also,with stuttering, the protein is stillmade, but it’s not made exactly right.With ML diseases, the proteins typi-cally aren’t made at all. Still, there area few complexities remaining to beunderstood, and we’d like to learnmore about them.”

The findings open new researchavenues into possible treatments forstuttering. For example, currenttreatment methods for some lysoso-mal storage disorders involve inject-ing manufactured enzyme into a per-son’s bloodstream to replace themissing enzyme. The researcherswonder if enzyme replacement ther-apy might be a possible method fortreating some types of stuttering inthe future.

The researchers estimate thatroughly 9 percent of people who stut-ter possess mutations in one of thethree genes. Among the next steps,they are conducting a worldwide epi-demiological study to better deter-mine the percentage of people whocarry one or more of these mutations.They are also conducting biochemi-cal studies to determine specificallyhow the mutations affect the en-zymes. A long-term goal is to usethese findings to determine how thismetabolic defect affects structureswithin the brain that are essential forfluent speech.

In addition to the NIDCD, researchers at theUniversity of Punjab, Lahore, Pakistan; theHollins Communications Research Institute,Roanoke, Va.; the National Human GenomeResearch Institute (NHGRI); and the NIH ClinicalCenter contributed to this work.

Press Release from the National Institute on Deafness and Other Communication Disorders:

Findings Suggest Stuttering, in Some Cases, May Actually be an Inherited Metabolic Disorder


SUMMER 2010 3800-992-9392STUTTERINGFOUNDATION

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Funds expended for:Creation, production, printing and distribution

of educational materials . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . $503,615 . . . . . . . 36.5%Public information and education . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 300,781 . . . . . . . 21.8%Educational symposia for professionals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .172,360 . . . . . . . . 12.5%Research on causes/treatment of stuttering and therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 254,687 . . . . . . . . 18.4%Maintain Web site and toll-free information hotline . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 87,169 . . . . . . . . . 6.3%Total for Program Services:. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . $1,318,612 . . . . . . 95.5%Other expenditures:

Administration and general . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51,984 . . . . . . . . . 3.8%Fund-raising expense . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10,318 . . . . . . . . 0.7%

Total Expenditures: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . $1,380,914 . . . . . . . 100%

Annual AuditThe annual audit of the Stuttering

Foundation financial reports for 2009was recently completed by the account-ing firm of Cannon and Company,Certified Public Accountants,Memphis, Tenn. Following is a recap of

funds and expenditures for the year.The 3.8% of expenditures for ad-

ministration and general expenses andthe 7/10 of 1% for fund raising are verylow, and since we are fortunate to havean endowment which more than cov-ers our overhead expenses, donors can

be assured that their gifts will go direct-ly to support our program services.

The Foundation is a 501(c)(3) pri-vate operating foundation which ex-pends its funds on its own programs andoperations and does not make grants toother institutions.

More than 100,000,000 People Reached!Feb. 10 was a blockbuster day with news of the discov-

ery of the first three genes for stuttering.Stephanie Nano’s Associated Press wire story reached

more than 1,700 newspapers, 5,000 radio andtelevision outlets in the United States, and radio,television and newspaper subscribers interna-tionally. In her article, Nanoquotes Dennis Drayna as saying

“stuttering is almost certainly a biologicalproblem.” She also included SFA’s JaneFraser’s comment that “in terms of mythbusters, this is re-ally an important step forward.”

Richard Knox’s NPR segment for Morning Editionreached more than 20 million listeners. He interviewedDr. Drayna extensively as well as speech-languagepathologist Kristin Chmela and Fraser. Chmela sharedher excitement about the new research not only from the

viewpoint of a therapist, but also of aperson who stutters herself.

Fraser shared with Knox how thrilled herfather, Stuttering Foundation founderMalcolm Fraser would have been to learnof this discovery. “He always felt that if hejust tried hard enough, he wouldn’t stutter.This research would have lifted a heavyburden of guilt from his shoulders.”

The news appeared around the world at light-ning speed with additional articles and seg-ments by Agence France Presse, the ChinaDaily, AAJ Pakistan TV, The Tehran Times,

The Watan Daily in Kuwait, the Brisbane Times, and a liveinterview in Sydney, Australia with Dr. Drayna.

Other U.S. outlets featuring the findings includeHealthNewsDigest, The PhiladelphiaInquirer, The Commercial Appeal, theArizona Daily Star, El Paso Times,Cleveland Plain Dealer, Newsday,MarketWatch, ABC, CBS, Fox News, CNN, the MiamiHerald, and many more too numerous to list.

Coverage of the discovery of the first genes forstuttering included the Stuttering Foundation’sbeing featured on marquees in Times Square.


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Michael Palin

Education Secretary EdBalls, Michael Palin andPrince Charles.

Dame Gail Ronson andMajor General BryanDutton greet PrinceCharles.

Prince Charles greetingTravers and Sandra Reid.Travers is Life Presidentand co-Founder of ARSC.

Renowned author LordMax Egremont with PrinceCharles.

Prince Charles Jane Fraser, Lady CarolineEgremont and Prince Charles.

Prince Charles andFrances Cook.

Jane Fraser is seen meet-ing Prince Charles on theTV news.

Stuttering Foundation President Jane Fraser at-tended a luncheon reception at Clarence Househosted by Prince Charles to announce His RoyalHighness’ support of an appeal to fund treatmentfor children who stutter. The appeal was launchedby the Association for Research into Stammeringin Childhood (ARSC), our Foundation partner inthe United Kingdom.

“It was a great honor to meet Prince Charlesand work to increase awareness and support forstuttering,” Fraser said.

The Prince of Wales commented, “I am sopleased to be Patron of this Appeal particularly inmemory of my grandfather, King George VI, who,as many of you will know, was afflicted with astammer for many years. His stammer cut him offI think in so many ways from his parents and hisbrothers and sisters and drove him into himself asI suspect so many stammerers will understand.Above all he experienced that awful fear of feel-ing different from others.”Read more about this event, view press cov-

erage, and find the Prince’s entire speech atwww.stutteringhelp.org.

Prince Charles SupportsStammering Centre

National Stuttering Awareness WeekMay 10-16, 2010

Mrs. Jane Fraser and Mr. Joe Fulcher



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The new Pediatrics Review andEducation Program, PREP The Curriculum2010, displays the Stuttering Foundation’sPhysician’s Checklist for Referral.

This Checklist helps physicians knowwhen and how to refer their young pa-tients to a speech-language pathologistfor treatment.

Barry Guitar, Ph.D., and Edward G.Conture, Ph.D., compiled this Checklist;and it is part of the bestseller, The ChildWho Stutters: To the Pediatrician, pub-lished by the Stuttering Foundation.

“Reaching pediatricans with accurate in-formation on stuttering is one of our mostimportant goals,” said June Campbell,M.A., CCC-SLP, who represents theFoundation at the American Academy ofPediatrics convention every year.

Outreach to Pediatricians

In response to the exciting genetic find-ings, our Friends on Facebook let us knowwhat they thought:

Ray As I listened to the NPR broadcastregarding the new genetic findingabout the cause of stuttering, tearswere streaming down my cheeks. I

reflected back on the 60 years of my life, andit just seemed as though so much of theridicule, self doubts and struggles meltedaway; in their stead were knowledge, under-standing and a feeling of inner peace. I nowthink that I know how Atlas must have feltwhen he was allowed to remove the weight ofthe world from his shoulders.

Katie As an SLP and Mom to 3 beautifulkids ages 8, 7, and 5 who've all stut-tered to varying degrees this re-search is very exciting! Our oldest

and youngest responded positively to modifi-cations at home to promote fluency (modelingreduced speaking rate, daily one on one time,etc.), but for our middle daughter who alsohad multiple articulation errors and relativelyweak language skills, the modificationsweren’t enough. She has been in speech for 3years, and is doing great! As an SLP I knewthat there were many misconceptions aboutstutterers and their parents. However, until Ifaced these misconceptions as a parent, andencountered people’s reactions to my chil-dren’s stuttering; I didn’t fully appreciate howpainful they can be to stutterers and theirloved ones!

Susanne As a mother of a 12 year old who stut-ters, I’ve been told numerous timesthat it is nothing the parent has doneto cause this stuttering, yet the doubt

was always lingering there. This is great newsfor all who have been affected by stuttering.

BrandonAs a teen that stutters I reallyhope that it is a gene defect anddoctors can somehow change it.I’ve always joked around with my

speech teachers about that and now it mayactually happen.

AlanAs a life long stutterer this could fi-nally lead to better treatment, toolate for me but for the younger peo-ple this is potentially good news.

Jackie As a mom of a 7 year old boy whohas struggled with this for 2 years itis heart breaking knowing there isnot a pill, cure or simple fix. And as

with Susanne, I was told there is nothing wecould have done to cause it, you still alwaysquestion yourself. But this study helps withrelieving some of that doubt. The StutteringFoundation has provided our family with a lotof information & the SLP & my son’s teach-ers have been amazing. Thank you all! T-shirt supports Foundation

T-shirts featuring running backsLaDanian Tomlinson and DarrenSproles have sold out.

Greathouse Screen Printing cranked outthousands of these special edition Chargersshirts with the headline “Thunderbolt andLightning, Very, Very Frightening.”

Each player donated the proceedsfrom the sale of the t-shirts to chari-ties close to his heart. Sproles, anSFA spokesman, chose the StutteringFoundation.

National Stuttering Awareness Week is May 10-16

60 Minutes Correspondent Byron Pitts Joins the Team of Famous People


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Award Continued from front page

Woody truly cares about people who stutter, and has worked tirelessly to give thema voice through his writing, his leadership, and his creative vision.”

Many of his writings have changed the way speech-language pathologistsevaluate and treat stuttering. His work on the Demands and Capacities Model hashad a profound impact on stuttering prevention and has influenced our under-standing of factors that contribute to the onset and maintenance of stuttering be-haviors, thus setting the stage for multi-factorial views of stuttering.

He has had a stellar career as a scholar and researcher. His book Stuttering, co-writ-ten with Janet Givens, received the Choice MagazineAward as the “Best Academic Book of 1997.” This wasthe first time that this “Oscar of Academic Publishing”had been given in the field of Speech Pathology. Otherbooks he has written are now considered classics in thefield including: Stuttering Prevention: a Clinical Method(1990; co-authored with Sheryl Gottwald & MurrayHalfond) and Fluency and Stuttering (1987). He is theauthor of more than forty articles and chapters concern-

ing: learning processes in stut-tering, the Demands andCapacities Model of stuttering,stuttering development, stutter-ing prevention, the assessmentof stuttering, the experience ofstuttering, and the efficacy ofstuttering therapy.

In the words of one nomina-tor, “his contributions go farbeyond the walls of the class-room and clinic. He has madethe greatest contribution ofanyone I know towards con-necting people who care aboutstuttering, and developingmechanisms for allowing themto learn and support one anoth-er. He demonstrated thisthrough his leadership as pres-ident of the International

Fluency Association, helping develop and nurture it as itgrew from a fledgling organization into a recognized av-enue of exchange and communication among the inter-national community in stuttering. He was instrumentalin the development of ASHA’s Specialty Recognitionprogram. He served on ASHA’s Special InterestDivision 4, Fluency and Fluency Disorders, helping towrite guidelines and to unify professionals otherwise

working in isolation in schools, clinics, hospitals and universities across the country.”His tireless advocacy for people who stutter has given a strong voice to children and

adults who stutter. His leadership in the development of support groups provided themodel for future support organizations throughout the world. When he foundedSTUTT_L, an internet discussion list for researchers, clinicians, and people who stut-ter, individuals from all of these groups had a forum to discuss and share ideas for thefirst time. He has had a profound influence on people who stutter, their families, andthe speech-language pathologists who treat them. It is with great respect and admira-tion that we present the 2010 Malcolm Fraser award to Dr. C. Woodruff Starkweather.

Malcolm Fraser andWoody Starkweatherin the 1970s

Woody Starkweatherand Vianne Bjornberg

Rossanna Portley,Hayley Arnold, CourtneyByrd and Jane Fraser

Woody Starkweather,Vivan Sisskin and Liz Edwards

Woody Starkweatherand Jane Fraser

Woody Starkweather and Sheryl Gottwald

Barbara Amster, Ken St.Louis, Hayley Arnoldand Vianne Bjornberg

Jennifer Watson andSusan Cochrane

Woody Starkweather and Vivian Sisskin

Rossanna Portley andShelley Brundage

Woody Starkweather and Janet Givens

Glen Tellis, KathyScaler-Scott andMarilyn Langevin



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The recent Disney version ofLewis Carroll’s classic, Alice inWonderland, garnered a great deal ofmedia hype. Even though the main-stream media has not made mentionthat Carroll was a person who stut-tered, his family history gives cre-dence to the discovery of the geneticlink to stuttering. Carroll was born toparents who were first cousins; al-most all of their eleven children,three girls and seven boys, struggledwith stuttering past childhood.

In LewisCarroll: ABiography, au-thor Morton N.Cohen stated,“The newbornson was thethird of whateventually be-came a familyof eleven chil-dren, and if these bloodlines deservecredit for the creative genius weknow to be Lewis Carroll’s, so per-haps they bear the blame for thestammer epidemic in Charles’speech and in the speech of much ofhis brothers and sisters.”

Lewis Carroll, the pseudonym ofCharles Lutwidge Dodgson, wasborn in 1827 to Charles Dodgsonand the former Frances JaneLutwidge. In addition to being awriter, Carroll was a mathematician,a logician, an Anglican deacon and aphotographer. His most notable lit-erary works are Alice’s Adventuresin Wonderland, Through theLooking Glass, The Hunting of theSnark, and Jabberwocky.

Biographer John Pudney ex-pressed in Lewis Carroll and hisWorld how Carroll’s childlike fan-tasies were not only the spark for hiscreative genius but also brought him

into a newworld wherestuttering didnot exist, “This‘perfectly hardcrystal’ con-taining child-hood was his

true essential life, expressed in theAlice books and in some poems …..When he spoke to these children, helost his habitual stammer. He simplybecame one of them …… Thisperennial childhood, together withthe fantasy and poetry that some-times expressed it, was his reality.”

In 1859, Carroll undertook speech

therapy lessons from James Hunt,who was considered the foremostspeech correctionist in Great Britainat the time and was estimated to havetreated 1,700 people who stutter. InThe Mystery of Lewis Carroll, biog-rapher Jenny Woolf stated that Huntboasted he taught the patient tospeak consciously in a way that othermen spoke unconsciously.

Nothing bothered Carroll moreabout his speech than how it affect-ed his ministry in the AnglicanChurch. His father had been anAnglican priest, and Carroll himselfbecame a deacon. Upon one occa-sion he accepted the invitation topreach and recalled, “I got through itall with great success, till I came to

read out the first verse where thetwo words ‘strife, strengthened’

coming together weretoo much for me,

and I had toleave the verseunfinished.”

C a r r o l l ’sn e p h e w ,S t u a r tD o d g s o n

Collingwood,wrote that his

uncle “saw thatthe impediment of

speech from which he sufferedwould greatly interfere with the prop-er performance of clerical duties.”

One longtime friend, May Barber,described Carroll’s speech, “Thosestammering bouts were rather terri-fying. It wasn’t exactly a stammerbecause there was no noise, he justopened his mouth …. When he wasin the middle of telling a story ……he suddenly stopped and you won-dered if you had done anythingwrong. Then you looked at him andyou knew that you hadn’t, it was allright. You got used to it after a bit.He fought it wonderfully.”

Biographer John Pudney wrote,“Perhaps his failure to correct hisspeech impediment was the overar-ching symbol of his entire life. Helearned to live with his stammering;he knewwhat it per-mitted himto do, whatnot, whereit wouldsnare himand de-stroy theeffects hesought toachieve and how to avoid the traps.”

Stuttering did not stop LewisCarroll. He brought to life many last-ing and imaginative stories for chil-dren. It is a shame that his own strug-gles and family history of stutteringare not well known as they wouldfurther inspire as well as help chil-dren who stutter.

“Rules & Regulations”Learn well your grammar

And never stammer…Eat bread with butter

Once more, don’t stutter.

~Lewis Carroll




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By Lacey Heid

I was diagnosed with a mild clut-tering disorder when I was 24 yearsold. Cluttering is a type of fluencydisorder, and it often gets misdiag-nosed or undiagnosed altogether. Iwant to discuss what has helped meimprove my speech. Hopefully,this will help others who clutterfind some strategies that may helpimprove their speech, as well asshed some light for SLPs on waysto help their clients with fluencydisorders.

As I got older, my peers startedreacting to my speech rate.Although I had a lot of friends,there would be that occasional per-son that playfully mocked my“stuttering” or mentioned that I al-ways talked too fast.

In the working world, it be-came worse. Co-workers andcustomers had a hard time under-standing me, and it became moreobvious to me as their commentsbecame more numerous. I haddifficulties speaking to authorityfigures, as well as talking on thephone. I was constantly told tospeak more quietly, and “what’s”and “huh’s” became a more fre-quent response from my listen-ers. At age 24, I realized howmuch I was letting my speechhold me back from better jobsand opportunities. I wanted to bean overall better communicator. Idecided to start speech therapy.

And that’s when I learned thetruth. I was not a stutterer atall. In fact, I was a clutterer.While stuttering is noted byrepetitions, prolongations,blocking, and secondary “es-cape” behaviors, cluttering isnoted by excessive normal dis-fluencies, rapid bursts ofspeech (“excited speech”), andslurred/omitted syllables.

While a stutterer can usuallyhear and feel their speech dis-fluencies, a clutterer is usually

unaware of them, and there-fore, has a hard time self-mon-itoring. Cluttering is often mis-diagnosed, or in my case, undi-agnosed, even though onsetcan occur as early as thepreschool years.

After my initial speech andlanguage evaluation, my SLP(who at the time was a studentclinician) and I began to work onnumerous strategies focusing onslowing my speech rate, and be-coming more intelligible.

Although I understood thepoint to the exercises, I didn’tappreciate their meaning untilthe day I walked into the roomand my SLP told me we weregoing to record parts of the ses-sion, and then play the record-ings back so that I could hearmyself talk.

Not many people like hearingthe sound of their own voice, mybeing one of them, so I was high-ly reluctant, but I turned to mypositive attitude. It was for myown good.

She had taped our casualconversations at the start of thesession, and then she taped myreading samples using thestrategies that we were focus-ing on. When she replayed ourconversations, I heard it. Iheard how fast I spoke. I heardthe missing parts of the words,the rapid speech, and I heard

how strained my voice sound-ed at the end of my sentences(because I would speak onresidual air). Then, we lis-tened to the recordings of thereading samples.

This was the turning point inmy speech therapy, because Iheard the difference. I heard thepausing. I heard every sound inevery word. I understood every-thing I had said. That is the pointwhen I realized that I could talkmore slowly and I could be un-derstood. All I had to do was takethese strategies and apply themto everyday conversation.

Self-Monitoring — This wasby far the most important strate-gy for me. I needed to be able tohear my own speech rate as I wasspeaking and adjust my speechaccordingly.

If I couldn’t hear myself omit-ting syllables, or hear myself“cramming” words together, Iwouldn’t be successful in stop-ping or preventing myself fromcluttering.

This is where the uncomfort-able recordings of my voicehelped so much, because I wasable to feel myself performingthe action of speaking moreslowly, and then I was able toplay back and hear myself speakat a normal rate. There was ahuge positive reinforcementwhen I discovered this. To read more about what

worked for Lacey, go to www.stut-teringhelp.org.

From One Clutterer to Another … Strategies that Helped Me

The Stuttering Foundationoffers a DVD and brochureon cluttering.

The Stuttering Foundationof America is a tax-ex-

empt organization undersection 501(c)(3) of theInternal Revenue Code andis classified as a private op-erating foundation as de-fined in section 4942(j)(3).Charitable contributions

and bequests to the Foundation aretax-deductible, subject to limitationsunder the Code.



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Judi Cheng, M.S., CCC-SLP, aStuttering Foundation Eastern2009 workshopper appeared re-cently on Univision Television

Network’sDesp i e r t aAmerica for

a segment on Spanish speakingkids who stutter.

Immediately followingCheng’s interview with YahairaMaldonado, the Foundationbegan receiv-ing hundredsof calls ande-mails fromS p a n i s hs p e a k i n gpeople look-ing for helpwith stutter-ing.

One view-er wrote, “Iam 17 yearsold. I havebeen stutter-ing since Iwas about 5. My mother sawyour interview on TV. We saw onyour website that you can give usa list of people that might be ableto help.”

“My son is the only one whostutters at his school,” comment-

ed the mother of a 6-year old boy.“I want more information on howto help him with teasing, and Ineed the name of a therapist.”

Another concerned parente m a i l e d ,“My childbegan stut-tering whenhe was 5 andnow he is 7.He is gettingtherapy twodays a week,but we needmore help.”“My daugh-

ter is 6-yearsold and has aslight stutterwhen she

speaks Spanish and sometimeswhen she speaks English. Can yousend me information to help?”asked a mother from New Jersey.

To view the Univision DespiertaAmerica segment on stuttering,visit www.stutteringhelp.org.

?Workshopper Reaches Spanish

Speaking Community

Stuttering Foundation workshopper JudiCheng, M.S., CCC-SLP, speaks about stut-tering on Univision’s Despierta America.

Did You Know?The Stuttering Foundation hasnumerous resources in Spanishas well as a Spanish Web site,www.tartamudez.org.

The Stuttering FoundationPSAs are in national and re-gional magazines as well asnewspapers across the country.Readers may spot an ad featur-ing Winston Churchill, NickBrendon, conservationist AlanRabinowitz and many others.

A new PSA with San DiegoCharger Darren Sproles hasbeen sent to sports magazinesfor use in upcoming issues.

Recent PSAs appeared in GoodHousekeeping, Redbook, ESPN,Seventeen, Popular Mechanics,Time, American Baby and news-papers including the PhiladelphiaInquirer, New York Post, and theNY Times Magazine.

The Stuttering Foundationthanks these publications for thisvaluable donated space thatreaches thousands and thousandsof readers looking for help.

Another Great Year!

The Child Who Stutters:To the Pediatrician hasbeen translated intoCroatian by DubravkaPrpic. It can be down-loaded from our Website, www.stutter-inghelp.org. Click on

“Translations” on the left.

Help Available in Croatian

Gregory’s Basic Principles on DVDClinicians are still receiving training in the

treatment of stuttering by the expert speechlanguage pathologist, Hugo Gregory,Ph.D., through footage shot at TexasChristian University in 1998. Thenew DVD, Basic Principles ofStuttering Therapy, is now availableat www.stutteringhelp.org. TheFoundation is grateful for the tirelessefforts of Carolyn Gregory, June Campbell,Diane Hill, Jennifer Watson and Kristin Chmelawho worked to make this DVD a reality.




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SFA’s Terri Jones prepares the booth atthe Georgia Organization of School-Based Speech-Language PathologistsBest Practices Conference in March.Patty Reed joined her at the booth.

Charlie Osborne and Jessica DeMille atthe conference of the Wisconsin Speech-Language Pathology and AudiologyProfessional Association.

Darlene Sommers, Kavita Kaul, and MaryannKaminsky at the conference of the Speech-Language-Hearing Association of Virginia.

Keep a Positive AttitudeI’ve been a stutterer for as long

as I can remember. It has alwaysweighed down my shoulders likeI’m wearing a backpack full ofrocks. It has stopped me from try-ing out in plays, doing extra-creditoral reports, running for 7th gradeofficer, and, in general, speakingaloud to any kind of audience.

When I came to the Center, I wasable to learn some new techniques tocontrol my stuttering, ones that actu-ally worked. Sadly, although “pro-longation”, “pull outs”, and “easybumps” had helped my stuttering,they didn’t really help my confi-dence. I could use the tools and speakokay, but it didn’t mean I wanted totalk to an audience.

So Maria gave me a challenge tovolunteer to read at school, offer topray at church, and raise my hand if Iknew the answer to a teacher’s ques-tion. This chal-lenge terrifiedme, and at firstit was like tor-ture. Gradually,I realized thateach time I didit, it becameeasier and easi-er. Soon it wasno big dealwhen I spoke orread in class,and now I evenfind it fun.

Stuttering is what makes me anindividual, and I’m not ashamedthat I’m a little different from ev-eryone else.

We should keep practicing ourtechniques to stay fluent, but most ofthe stuttering is in your heart. Whenyou release the embarrassment, thesadness, and the stress of stutteringout of you, it will become little morethan the nose on your face, the shapeof your eyes, the color of your hair.

Yes, I stutter, but I don’t care. It’swhat makes me, me.Megan, 14

Sense of Humor HelpsI think it’s good for everyone

to have a good sense of humor. Ilike Jeff Dunham and DaneCook. I like to quote some oftheir lines to my friends and fam-

ily. It’s easy for me to talk to peo-ple without bumping when Iquote others, and it makes mehappy when I tell stories to peo-ple that make them laugh.

It’s also good to have a sense ofhumor when other kids say thingsthat hurt your feelings. You justhave to remember that they don’tunderstand and haven’t learned howto treat anyone with respect.

Remember, bullies have morepersonal issues than other kids.Ignore them and remember alwayshow great you are.London, 12

What Listeners Should KnowOne percent of the world’s popu-

lation stutters as adults and 1 inevery 20 children have a stutteringproblem. We need time to get outwhat to say, and if you insult one ofus, are you going to insult all 6.7

million of us?We need timeto get ourwords out, andif you ignoreus, can you becertain youdidn’t misssomething im-portant? Donot make as-s u m p t i o n sabout peoplewho stutter,you might be

quite a bit wrong. I am saying this because I do not

want people to assume I have amental issue, or that I forgot myname, just because I got stuck onthe first C. Give us time, let usspeak!Clay, 13

Feels Like a MazeI’m in a maze, trying to find my

way out. It seems like, there’s noway out of this never-endingmaze. Every stutter, block, andstruggle makes me more con-fused. The only way out is to usemy techniques, prolongation,pull-outs, easy/fake stuttering,and responding to my moments ofstuttering. Finally, I’ve found myway out of the maze.Devan, 14

Students in the Wasatch Children’s StutteringManagement Program wrote these storiesand presented them to the group on selectedtopics regarding stuttering.

Carol Ecke was ably assisted by JenniferWatson, Valerie Johnston, Tara Hepler,Montse Vallejo, and Geoff Coalson atthe marvelously successful convention ofthe Texas Speech-Language-HearingAssociation. Russ Hicks of NSA providedthis fine photo.


SUMMER 2010 11800-992-9392


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By Dylan Levin

Two years ago Dylan Levin askedfriends and family to donate to theStuttering Foundation as a way tohonor his Bar-Mitzvah. Now as a highschool student, he is busy makingspeeches and presentations without let-ting stuttering get in the way. The fol-lowing essay is a podcast script Dylangave recently at his school.

As many of youknow or don’t know, Ihave a speech disflu-ency called stuttering.I have had this sincethe age of four. Mystuttering is an invol-

untary movement, which I can’tcontrol. Stuttering was never anissue at school; I always participat-ed in class and I never felt that therewas a problem until one day insixth grade. That was the day whenI realized that my stuttering wasnever going to go away and there-fore I had to work hard on myspeaking abilities.

It happened at my schoolspelling bee. There were twoways people got to be a part ofthe spelling bee. The first onewas where you compete withpeople in your own advisory andthen the winners go against peo-ple from all of the other advi-sories. Lucky for me, I won thespelling bee for my advisory. Ididn’t think about the fact that Iwould have to spell words infront of the school at that mo-ment in time because I was justhappy that I had won. The daywore on and I started to becomereally nervous because I hadnever given an announcement ordone anything, really, in front ofthe entire school. I would partici-pate and give presentations in myclass and there I felt very com-fortable. But speaking in front ofthe whole school made me ner-vous. I was nervous because onlythe people in my grade really

knew that I stuttered and thatbothered me because what if Istuttered during the spelling bee?How would people respond?

At 2 p.m., it was time for thespelling bee. I walked down thestairs to the cafeteria where itwas being held and I took myseat on the stage. The problemwas that I psyched myself out. Iknew that I was going to fail.One by one the kids spelled andone by one they got it right. Myturn. The word was population.Dead silence. I must have saiduh and um about a hundredtimes to make it seem like I was-n’t stuttering. And the thing wasthat I knew how to spell theword, but I just could not get theword out. Population is not ahard word to spell. Then the

most horrible thing happened,laughter. Never in my life hadanyone really laughed at me likethis girl did. Her name wasAllie, and I will never forget her.

I purposefully spelled the wordwrong, just to get out of this em-barrassing situation. I went intothe bathroom and started to cry. Iwas mortified and angry. I beganasking God why me, why did yougive me this terrible stutter? Whydid you make people laugh? Iwalked backed into the cafeteriaand sat in the back. I did not wantto show myself to anyone. WhenI came back the teacher gavesome weak speech about beingrespectful to all of the people inthe spelling bee, but everyone

could tell that it was directed atwhat happened to me. Nobodyknew what I had just gonethrough and nobody understoodmy situation.

Later that night, the phone rangand it was Allie’s teacher callingto discuss what happened atschool. I did not tell my mom be-cause I did not want her to get in-volved. I did not want her to getupset. The truth is that I probablyshould have told her the momentI got in the car, right after school.Mr. L told my mom the whole sit-uation, and she wanted to comeinto his class, to talk with thekids about my disfluency andhow to be accepting of a personwith disabilities. I know that mymom, when it comes to myspeech disfluency, will alwayshave my back.

Four years have passed sincethis happened and now it is onlya memory lost in the pages ofmy life. My speech from thattime has improved and I owethat partially to Allie. If she hadnot laughed then I probablywould not have experienced realvulnerability. Every person thatdoes stutter, has his or herhuman form wrapped in a blan-ket of vulnerability all the time,but it is how we persevere dur-ing these hard times that trulydefine us. I know now that Iwould not be the same personthat I am today if I did not stut-ter. I carry around this memorywith me always because it is areminder that I must keep onpersevering and I must keep ontalking because if I let this stut-ter overcome me, then I havelost all hope. What I am trying toconvey is that people must per-severe to overcome any obstaclethat they are faced with. Maybeone day I will not have a speechdisfluency, but until then, I willkeep living and talking.

Turning a Negative Into a Positive


Friendships HelpDear SFA:

I feel bad when I stutter. Ican’t express what I want tosay. When I repeat a word Iget frustrated. When thishappens, I stop and thinkabout what I’m going tosay. Sometimes this helpsme and sometimes it does-n’t. If I’m stuttering a lot,my friends give me signs todo smooth speech. Thishelps me control my stutter-ing. Sometimes I tell my-self to do smooth speech.Robbie, 11Winston-Salem, N.C.

Just Like DancingDear SFA:I don’t like it when people

ask me, “Do you stutter?” Ifthey ask me, I say, “Yes, Ido,” and keep on going. I getembarrassed when I stutter,but I always try to keep going.

I think stuttering is likedancing. If you practicedancing you will becomebetter, just like if you prac-tice the tricks you learn tonot stutter, you get better atnot stuttering.

It is all right to stutter. Somany people do it, evencelebrities do. If someonemakes fun of you or doesn’ttalk to you because youstutter, that is their loss.Keep your hopes up andkeep on practicing. DON’TFEEL ALONE!Courtney, 10Greenwich, CT

Tips for TeasingDear SFA:

Do you stutter? I know Ido. If you do, do yourfriends tease you about it?

If you do stutter, don’tworry, it’s all normal. Evensome grown people do it.Everyone stutters some-time in their life. If youhave a friend who stutters,don’t tease them about it.

There are some strategiespeople use to help themselves.Like me, I worked on using arubber band and stretching outthe first word so I don’t stutterin the middle of the sentence.There’s also using slow, easyspeech to help the muscles inyour mouth not get all tightand clenched. All of thesestrategies can help you to stopstuttering if you just take yourtime and slow down.

Plenty of people stutter.Although some have differ-ent reactions when they doit. Some just continue onand don’t pay attention.Others feel that they’regoing to get nervous andstart to get worried, and thatjust makes it worse. To stopyou need to be calm anddon’t even think about it.

If people bully you or teaseyou because you stutter, justwalk away and don’t do any-thing to them because some-times the people who bullyand tease are usually thepeople who do stuff like that.They do it to let out theiranger on other people in-stead of trying to calm down.

If you just don’t worryabout stuttering, you willhave a good time and noteven know you do it. So, ifyou stutter, don’t evenworry about it and you willbe a happy person.MaxCarmel, Ind.



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Continued on page 13

Send letters to SFA, P.O. Box 11749, Memphis, TN 38111-0749 or e-mail [email protected].

Dear SFA: Reader Response

My name is Robbie. I’m 11 years old and I’vebeen in speech for three years. I work on mystuttering by using strategies. The first one isusing a speech mountain to remind me to startwith air and then come out with my word. thesecond is “think time”/“black out.” It helps methink of words before I start sentences. Anotherthing I like to use is eye contact because it helpsthe person I’m talking to know that I’m not fin-ished talking. So, if you stutter, you can tryusing these strategies.

Robbie, 11

Tallahassee, Fla.

My name is Jordan. I am 10. I stutter with cer-tain letters such as W, L, and B. But I havefound some strategies to help me. I’ve foundbacking out of tension and think time and theyhelp my stuttering! People used to make fun ofmy stuttering. But I did a presentation in ourclass about stuttering. Now they don’t make funof me. Now that I found some speech strategiesand the kids in my class know why I stutter, Ifeel awesome about stuttering!

Jordan, 10

Tallahassee, Fla.



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Feeling ConfidentDear SFA:

Hi, my name is Kyle and I am8 years old. I’ve been stutteringfor as long as I can remember. Ididn’t feel confident, but thenstarted speech class,and learned bouncytalk. Now, I feel moreconfident and raise myhand in class, and talkto people more.Because when I didn’thave speech class, Ididn't want to talk.Kyle, 8Denver, Colo.

Learning About MeDear SFA:

My name is Luke andI am in 4th grade. WhenI realized I sounded dif-ferent I was five. Itsounded like I ran out ofair, and it gets quieter,quieter, and quieter. Ifelt like I hated it. It iseasier when I am read-ing and not talking. I amcalm when I am writing.I am less calm in mathclass when the teachercalls on me. I stuttermore when she calls onme. If we are in a crowdI stutter more because Iam around more people.This is my story. LukeDelaware

Strategy HelpsDear SFA:

My name is Nathan. Iam 9 years old and I amin third grade. I like toplay video games and Ilike to play baseball. Ialso like to ride my bikeand I can ramp reallyhigh. I have one brotherand one sister. Mybrother is 10 and my

sister is 8. My friends makefun of my voice because I stutter.They just copy my voice. I havebeen stuttering for about threeyears. I mostly stutter at home.Sometimes people tell me to “spitit out.” That does not help me saywhat I want to say. I usually say

“never mind” and I walk away. My brother also stutters. My

sister doesn’t stutter. I havelearned some strategies to notstutter. One strategy is called“bouncing.” Bouncing meansthat I might repeat a sound orword, but I do it in an easy way.

My speech teacher letsme play games abouttalking. I try to ignorepeople who copy my stut-tering. I am a great kidand I really don’t careabout my stuttering. I tryto not worry about thepeople who make fun ofme.Nathan, 9Anamosa, Iowa

Eye ContactWorksDear SFA:My name is Willie. I like

to play video games. Ihave been stuttering sinceI was 3. I go to speechclass. I think it is fun. Wehave worked on keepingeye contact. Eye contactis important because ithelps others know whenyou are finished talking. Ialso learned about thespeech machine. I don’tlike stuttering. I stuttermore when I am in myclassroom or talking toadults. It makes me feelbetter to know that otherkids stutter too.WillieAlabama

Continued on page 16

My name is Chetan. I am 10 years old and I am agood person. I live in a brick duplex in Wichita, Kan.I like cars. In my picture, on the first road I am hav-ing a good day. On the second road, I am not havinga good day and my speech is bumpy. I need to take adeep breath and relax. I think going to speech is fun.Chetan, 10Wichita, Kan.

I’m 91⁄2 years old and my name is Asta. I live inTallahasse, Fla. Stuttering makes me feel unhappy be-cause children in my school make fun of me. I like touse easy beginnings because they help me avoid stut-tering. I also back out of tension when I am about tostutter. It makes my speech smoother. I gave a presen-tation about stuttering to my classmates. Now theydon’t make fun anymore. And because of my presen-tation, stuttering is much easier for me!Asta, 91⁄2Tallahasse, Fla.

Letters Continued from page 12

Willie drew this picture.


No One’s FaultDear SFA:

I hope kids around theworld will read this. I am 10years old. I love to playsports. I play baseball, soc-cer, football, and basketball. Istarted stuttering when I was5. I know what it feels like tobe picked on by other kids. Itmade me mad.

I go to speech class. I havelearned that it is not my faultor my parents’ fault that Istutter. There are other kidsin the world like me. It’s nottheir fault either. There areeven famous people whostutter. I have found thatsinging helps me talk better.Try it! It might work for you.Rae’ Quan, 10Alabama

P.O. Box 11749 • Memphis, TN 38111-0749


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This newsletter is published quarterly. Please e-mail address

changes and story ideas to [email protected].

Volume18, Issue 3

Renee Shepherd . . . . . . . . . . . . . EditorScot Squires . . . . . . . . . . . . . . . . Designer

Special thanks to Joan Warner, Patty Reed,Susie Hall, Pat Hamm, Lisa Hinton, TerriJones, and Carol Ecke.

National Stutter

ing

Awareness Week

is May 10-16!

www.stutteringhelp.org • 800-992-9392 • www.tartamudez.org

Fourth-grader Rachel of Collegeville,PA, drew cars that are stuck.

This drawing is byAdam, 5th grade,of Trappe,PA.

Rae’ Quan drew this picture ofbaseball and basketball, which aretwo sports he enjoys playing.

Books4Leap of Faith by Richard Benyo. (2009)Pennsylvania Heritage Books. Available atwww.amazon.com.4Treatment of Stuttering, Established andEmerging Interventions by Barry Guitar andRebecca McCauley. (2010) Lippincott,Williams, and Wilkin, Baltimore.www.lww.com.4Research on Stuttering in Pre-school andSchool Children by Zbigniew Tarkowski andEwa Malgorzata Skorek. (2009) UniversityZielonogorski Press, Poland.4Clinical Decision Making in FluencyDisorders by Walter H. Manning. (2009)Delmar Cengage Learning, Clifton Park, NY.www.cengage.com.4Practical Intervention for Early ChildhoodStammering by Elaine Kelman and AlisonNicholas. (2008) Speechmark Publishing,Ltd. Milton Keynes, U.K., www.speech-mark.net.4Stammering, Advice for All Ages by ReneeByrne and Louise Wright. (2008), SheldonPress, London, www.sheldonpress.co.uk.4Speak Freely: Essential Speech Skills forSchool-Age Children Who Stutter by MarkAllen, Ph.D., (2007) Speak FreelyPublications, Evanston, IL , www.cfst.com.4Beyond Stammering, Revised edition byDavid Maguire. (2008) Souvenir Press,London.4Stuttering: An Integrated Approach to ItsNature and Treatment, Third Edition byBarry Guitar. 2006. Available fromLippincott, Williams & Wilkins, 800-638-3030, www.LWW.com.

See our Web site, www.stutteringhelp.org,for a complete list of books.

Letters Continued from page 13

Kids, find more inspirationalstories, fun articles, and videoson our Web site, www.stutter-inghelp.org. We have a pagejust for you!


Summer newsletter 2010_online(2)

Documents

play video

barry guitar

woody starkweather

language pathologists

web site

national institute

spelling bee

lewis carroll