factors in stuttering are significantenough that it’s possible to identifyspecific genetic factors.

“While we have a way to gobefore we can identify thisgene, we are encouraged thatprogress is being made,” saidDennis Drayna, Ph.D., seniorauthor of the study. Dr. Draynais pursuing his studies at the

National Institute on Deafness andOther Communication Disorders,part of the National Institute ofHealth in Bethesda, MD.

With the publication of a study inthe American Journal of MedicalGenetics, understanding of the genet-ic causes of stuttering hasmoved one step forward.

The report, entitled “Resultsof a Genome-wide LinkageScan for Stuttering,” demon-strates that a gene on chromo-some 18 in humans can have astrong effect on the development ofpersistent stuttering. While the geneitself has not been identified, thisstudy demonstrates that inherited

Who better thankids to talk to otherkids about talking?Well, maybe a bas-

ketball named Swish.Swish!—it’s a win-

ning sound in hoops,and now it’s the name ofa winning cartoon char-acter created to teach

kids about stuttering.Swish, an animated basketball with

engaging, human-like features, is oneof the stars—along with his younghuman friends—in the StutteringFoundation’s new DVD by kids, aboutkids, and for kids.

Swish is the creation of students AliModara, Helen Kang, Rich Sun, andMichelle Jackson in the ComputerGraphics Technology Department atPurdue University, under the directionof Dr. Mark Bannatyne, head of thedepartment. The speech-languagepathology team is comprised of LisaScott-Trautman, Bill Murphy, Kristin

Chmela, Lee Caggiano, and JoeDonaher. Between them, they are cre-ating a fun, entertaining, and highlyeducational DVD for kids ages 7-11,with much serious work behind thelight-hearted approach.

The SFA team has been workingthroughout the year on the conceptand script and on videotaping children

ACTING OUT

SUMMER 2004

A Nonprofit Organization Since 1947... Helping Those Who Stutter

� Nick Brendon Birthday Bash� World’s Largest Tiger Reserve� Empowered: A Success Story� From Washington to Kenya� Golf Tournament Benefits SFA

1-800-992-9392 www.stutteringhelp.org

Continued on page 3

If actions speak louder than words,this year, the message of the StutteringFoundation and others should be loudand clear.

Our Time Theatre in New York Cityis hosting a gala to mark NationalStuttering Awareness Week, May 10-16. Participants will celebrate May 10

THESTUTTERINGFOUNDATION

Continued on page 5

New “Kids for Kids”DVD Stars Swish andHis Young Friends

Theater Stages Benefit Gala forNational Stuttering Awareness Week

ACTING OUTWhy stop at just speaking out? This year we’re

Our Time company members Linda Gjonbalaj, Jonathan Greig, Corom Buksha and David Nachman,

with cast members of STOMP, musicaldirector Everett Bradley, host actressJane Alexander, the Our Time Teens,special honoree Dr. Alan Rabinowitz,and SFA president Jane Fraser, amongothers.

“This marvelous event is a kick-off

for NationalStuttering

AwarenessWeek!

for NationalStuttering

AwarenessWeek!

From left, Purdue University students AliModara, Helen Kang, Rich Sun, and MichelleJackson, creators of Swish!

Genetic Studies Gain Ground

Continued on page 7

Empowered Speech Triumphs Over Lifelong Stuttering1-800-992-93922 www.stutteringhelp.org

Joy Emery, 64, has stuttered formost of her life. But she delivered thecommencement address in clear, flu-ent sentences that so captivated her au-dience that they sat in utter silence be-fore erupting in applause as shereached her triumphant conclusion.

Joy has much to say on the topic ofempowerment, the subject on whichshe was asked to speak at the gradua-tion at the College of St. Rose inAlbany, NY. That she was able to sayit so well is a tribute to her own“tremendous recovery” over thespeech disorder that, in herwords, significantly curtailedher life.

“Empowerment comes fromtaking good risks and making afew mistakes in order to gainsuccess,” Emery told graduatesand guests gathered onDecember 20. “Don’t be afraidto make mistakes; you’ll proba-bly make quite a few beforeyou’re through. Most of us do.”

The words were especiallypoignant, because until 10years ago when she was re-ferred to the college’s fluencyprogram, Emery was so afraidof making mistakes that sheavoided speaking to anyoneother than family.

“In the past, stuttering domi-nated my life, because I experi-enced so much fear, embarrassment,shame and exhaustion,” Emery said in

her address. “I felt different from all ofmy peers and so I developed a cozy lit-tle place called my “comfort zone”which gave me protection, a pre-dictable life, and insulated me fromthe pain of making mistakes. I felt im-prisoned with deeply engrained nega-tive feelings about my speech and,moreover, about myself.”

Emery credits the fluency programat St. Rose with empowering her tonot only say what she wanted to say,but also with giving her a sense offreedom and the confidence to take on

leadership roles. She is particularlygrateful for Dr. Charleen Bloom andDr. Donna Cooperman, professors inthe Department of Speech Sciencesand Communication Disorders.

“Our approach is a synergisticone,” explains Sister Char, the pre-ferred title of the Sister of St. Joseph.“We integrate fluency shaping andstuttering modification, and we inte-grate speech and language compo-nents, attitudinal components and en-vironmental components. We believethat you can’t do a program without

that.”This holistic approach to speech

therapy has been in existence at thecollege since Bloom initiated the pro-gram in 1971 with a group of about 19people. A weekend workshop eachMarch for those who stutter, now in its29th year, was added next, followedby teen and children groups, a parentgroup, and the addition of a siblinggroup this year. The groups embraceboth self-help and therapy practices,notes Sister Char, who has managedthe program largely on her own. Twoyears ago, she was joined by Dr.Cooperman, with whom she has co-authored a textbook based on thismodel. (See Books , page 12.)

Joy, who began as a client at the col-lege’s Pauline Winkler Center, nowteam-teaches the graduate fluency class.

“She was severe,” Bloom says of

Emery’s speech when she started, “Weworked on fluency targets as well asall the attitudes. She’s to the point nowthat she’s gone from hiding from peo-ple to being in leadership roles withinthe community and Council, with theSFA and other places. She’s beenteaching the class with us for abouteight years. The students get a greatmix. Everything we teach about stut-tering, Joy explains how it affects herlife.”

The support group, whose member-ship is fluid, was important for her

own sustained fluency, saysJoy, who had been through anumber of other programs, be-ginning in childhood. Afterearly failed attempts at thera-py—which included changingher orientation from left-hand-ed to right and then back againand a program in which shewas taught to speak and chewgum at the same time—Joyavoided therapy until she wasin her 40s. A three-week preci-sion fluency-shaping courseworked briefly, but withoutlasting effect.

“I came back fluent, but Ifell right back,” Joy says. “TheCollege of St. Rose started mewith a very low hierarchy: easyspeaking situations, graduallygetting tougher and tougher all

the time. What they did was to workon my fluency so that I was stable. Atthe same time, we had a self-helpgroup where I was able to practice myfluency.”

Simultaneously working on atti-tudes and feelings as well as communi-cation and socialization skills made thedifference, Joy says. “The environmen-tal component helped me to understandthe family situation, and the teamteaching—telling my story—helped agreat deal. As a result, I gained atremendous fluency, but also a tremen-dous recovery.”

Still, what made Sister Char sug-

Joy S. Emery, who has stuttered for nearly 64 years, wasthe keynote speaker at the College of St. Rose, Albany, NY,commencement. She received an honorary doctorate.

“I allowed stuttering to dictatemy social life, who my friendswere and how I spent my time.” “Not in my wildest dreams did

I expect that my journey tofluency would lead to a 180�change in my life.”

Continued on page 5

agement strategies and how the WCSand Myanmar’s forestry departmentwill work together to make the world’slargest tiger reserve a reality.

This is not the first reserve that hasresulted from the zoologist’s efforts.

The Society’s web site(www.wcs.org.) documents workdone by Rabinowitz and theSociety’s Jaguar ConservationProgram team to establish a safecorridor for jaguars spanning 14

countries, from Arizona throughCentral America and into northernArgentina.

In Search of Jaguars, a NationalGeographic Specialthat aired this pastNovember on PBS sta-tions nationwide, alsodocuments the team’sefforts to protect theendangered cats.

The efforts are pay-ing off. Rabinowitzwill be part of a cere-mony this June inCosta Rica, dedicatinga wildlife sanctuarythere as part of the“necklace” or corridor

of protected wild placesthe elusive cats callhome.

New StutteringAwarenessposter fea-tures AlanRabinowitz.Great foryour clinic, community,school,library, orworkplace.Order on-line or call1-800-992-9392.

We have long said that “if you stut-ter, you’re in good company.” That’sbecause many of those who stutter ac-complish tremendous things in life.

Take, for example, the estab-lishment of the world’s

largest tiger reserve, ac-complished this Marchunder the leadership of

SFA Board member AlanRabinowitz, Ph.D., director

of the Science and ExplorationProgram at the Wildlife ConservationSociety (WCS).

The government of Myanmar, for-merly Burma, recently announced thecreation of the reserve, which covers aland area nearly as large as Vermont.It’s a project Rabinowitz has beenworking on for 10 years.

National Public Radio’s ReneeMontagne interviewed Rabinowitzfor a special that aired March 15 onMorning Edition. (Interview andphotos available at www.npr.org/pro-grams/re/archivesdate/2004/mar/tigers/) An article also appears in theApril, 2004, issue of NationalGeographic magazine.

Rabinowitz’s many visits toMyanmar’s Hukwang Valley—as well as his struggle with stut-tering—are detailed in hisbook, Beyond the Last Village.(Island Press, see Books on page 12.)

His first visit was in 1993, and in1999 he surveyed the tiger population,using “camera traps” to capture onfilm the big cats, ofwhich probably only 100now remain. He alsobegan working with thecountry’s national parksdepartment to create,then expand, the wildlifesanctuary.

Although the an-nouncement is a tremen-dous step forward, the“really hard work,” ac-cording to Rabinowitz,is actually just begin-ning. He plans severalmore trips to Myanmarto work out details onfunding, wildlife man-

SUMMER 2004 31-800-992-9392

□

SFA Board Member Helps EstablishWorld’s Largest Tiger Reserve

Alan Rabinowitz tags a jaguar.His work in Belize resulted inthe first sanctuary for the cats.

to celebrate everyone’s efforts to in-crease awareness.” said Fraser, whowill be introducing Rabinowitz, SFABoard member and this year’s OurTime Award winner. “Alan is an out-standing spokesperson for NSAW2004. It’s exciting to see so much ofhis hard work in other areas of his lifecoming to fruition this same year.”(See related story, this page.)

The evening begins with a cocktailreception at 6 p.m. at the Andavi Cafe,then moves to the Lucille LortelTheater for an 8 p.m. performance bythe Our Time Teens, the cast ofSTOMP, Adam Pascal, Alice Ripley,and musical director Everett Bradley.

Our Time Theatre is a nonprofit or-ganization dedicated to providing anartistic home for young people andadults who stutter.

The purposes of this event are man-ifold,” said Artistic Director andfounder Taro Alexander. “We want toincrease awareness about Our TimeTheatre, about National StutteringAwareness Week, the StutteringFoundation, and about stuttering ingeneral.

“We want to begin the tradition ofhaving a wonderfully inspiring, publicevent on the first day of NationalStuttering Awareness Week wherepeople can come together and cele-brate. In short, we want to start theweek off with a bang. It’s also a chancefor the teenagers at Our Time to speakpublicly about the challenges that face

Continued on page 7

Continued from page 1

NATIONAL STUTTERINGAWARENESS WEEK

For more information on what you can doabout stuttering, write or call toll-free:

1-800-992-9392

www.stutteringhelp.orgwww.tartamudez.org

STUTTERINGFOUNDATION™A Nonprofit OrganizationSince 1947—Helping Those Who Stutter

3100 Walnut Grove Road, Suite 603P.O. Box 11749 • Memphis, TN 38111-0749

StutteringWasn’t theEnd of HisWorld.Explorer, wildlife conservationistand author Alan Rabinowitz hasdiscovered new species and hidden worlds. That’s because he didn’t let stuttering becomethe end of his.Alan knows that when the goal is worth achieving, nothing is beyond reach.Discover what you can do aboutstuttering. Write or call us toll-free,and open up your world.

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or treat him in a way that makes himfeel uncomfortable.

“Did you know that three millionAmericans stammer?” I exclaimed.

A smile broke across Kevin’s face. Ishowed him the photographs of famouspeople who stutter: His teacher andpastor nodded in astonishment. I ex-plained what we know about stammer-ing—that people who stutter seem to beborn with a neurophysiological predis-position to stutter, and that stutteringseems to be genetically transmitted inmany cases. We discussed how manythousands of messages travel from thebrain to our muscles to allow us tobreathe and move for speech. I ex-plained that somehow, as some peoplego from an idea to shaping sound intospeech, they sometimes stammer.

Kevin had hoped that I would becuring him of this “problem.” I ex-plained that I would not cure him, butwould show him how he could learn tomake speaking easier. We practiced“easy speech” techniques. I thenshowed him the Self-Therapy for theStutterer book, and reviewed the stut-tering modification techniques, so thatKevin and his teachers would be well

4 www.stutteringhelp.org 1-800-992-9392

“Dear Barbara,Asante sana kwa kuni julisha ya

kuwamaba ni na waza kapona.Ni mimi wako,

Kevin O.”This handwritten message was given

to me by Kevin, a 14-year-old boy wholives in an orphanage in Nakuru,Kenya. Through an amazing series ofevents, I got to know this young manwho has a severe stuttering disorder. Itwas an experience that deeply touchedmy heart and one I hope will changeKevin’s future.

I had been contacted months earlierby a Childcare International volunteerwho wondered if I might send some in-formation to assist Kevin’s teachers.They were perplexed by how to helpthis child who stuttered so severely thathe rarely attempted to talk. Ironically, Iwas planning to travel to Kenya andwas gathering books and brochuresabout communication disorders toshare with hospital and school person-nel. And so it was, that on February 13,I met with Kevin in a large, sunny din-ing hall, joined by his teacher, schoolprincipal, pastor, and the volunteer.

As I sat down with Kevin, I askedhis teacher to interpret the letter Kevinhad written before my arrival: “Thankyou very much for informing me that Ican be healed with my speaking. Yourssincerely, Kevin O.”

Kevin spoke in English and Swahiliduring our time together and stutteredin both languages. Kevin referred to thedisorder as “kigugumiri” or “stammer-ing.” He explained that he had beenstammering since he was about fouryears old. He had no idea what causedhis stammering, although he did recallthat one of his uncles also stammered.When I asked him if he had found any-thing to do that makes it easier to talk,he replied, “Not yet.” I asked how hegot his ideas across when he had diffi-culty talking. He responded, “Go slow.”“Good idea!” I replied.

As Kevin and I talked, often with theassistance of his interpreter, I learnedthat when he stutters, he doesn’t knowexactly where or how the sound stops,but he is aware of working hard andthen getting tired. He also shared thatpeople occasionally make fun of him,

From Washington to Kenya: A Journey for Fluency

Barbara Mathers-Schmidt, Ph.D., andKevin study stuttering modifications toolsin Self-Therapy for the Stutterer. Kevin, wholives in Kenya, never knew there was helpfor those who stutter. Barbara’s trip toKenya included sharing much-needed re-sources donated by the SFA with schoolsand hospitals in the region.

prepared for their work together.Only months before, Kevin had been

living on the streets. He was addicted tosniffing glue, and he rarely spoke. Henow lives in a comfortable residentialsetting with adults who care deeplyabout his well-being and his extraordi-nary potential. This bright, appealingboy readily engaged in the discussionabout stammering and seemed relievedas he learned more about a problem thathad made him feel so hopeless.

The school personnel likewise weresurprised to learn that something can bedone to help those who stammer. Theyadeptly participated in consideringstrategies to help Kevin. They willbegin by reviewing materials donatedby The Stuttering Foundation and willbe meeting regularly with Kevin topractice fluency skills.

While in Kenya, I visited six otherschools in somewhat remote areas ofthe Central District. The schools rangedfrom a private boarding school with arelatively well-equipped computer labto a four-room secondary school withdirt floors and no electricity. Part of mymission was to discuss stuttering withthe headmasters and leave resource ma-terials donated by The StutteringFoundation. It was not surprising thatalmost everyone knew someone whostuttered, and, without exception, theyhad the misconception that nothingcould be done to help. In each case,teachers and administrators were eagerto learn, and welcomed the informationprovided by the Stuttering Foundation.

Through e-mail, Kevin’s teacher andI continue to work together to helpKevin. Kevin happily agreed to reportback to me about how he is doing. Heis eager to correspond with a 14-year-old American boy who stutters.

As we moved toward the end of ourtime together, it was a joy to hear Kevinchuckle before he used fluency shapingand stuttering modification techniqueson one of the few Swahili phrases Iknow: “Hakuna matata!”*

Barbara Mathers-Schmidt, Ph.D., is aprofessor in the CommunicationsSciences and Disorders Department atWashington Western University,Bellingham, WA.

*Don’t worry, no problem!

By Barbara Mathers-Schmidt, Ph.D.

“Almost everyone knewsomeone who stuttered, and,without exception, they hadthe misconception that noth-ing could be done to help.”

tournament is to raise money for sever-al of Al’s favorite charities. This year,the Stuttering Foundation is one.”

Foote, a competitive amateur golferwho has played in the tourney for thepast 15 years, also stutters so hadmuch in common with Venturi.

“It’s really through Ken Venturithat we’re making a contribution tothe Stuttering Foundation. I had lunchwith Ken and Terry Cole [tournamentorganizer] and he discussed his expe-riences as a teenager with stuttering,and how he worked through it andthen became a CBS commentator.”

The invitational brings together 130players over three days, playing twocourses in what has long been a meccafor golf afficionados.

And after the play, there is play!Clinics and demonstrations. A

glittering banquet with singers,entertainers, and comedians. A

silent and live auction. Roastsand toasts.

“It’s an all-around wonderful threedays of golf,” Footeagreed.

It’s also an all-around wonderfulway to help thosewho stutter.

The StutteringFoundation thanksall participants.(Final results andpictures in the nextnewsletter.)

Play a fewrounds, soakup the sun inPalm Desert,and sip cham-pagne withgolf legendsKen Venturiand AlGeiberger—and donate

to charity atthe same time?

The annual“Mr. 59” GolfInv i ta t iona l

hits a hole in one with this plan!Thanks to the efforts of Bob Foote

and Ken Venturi, the StutteringFoundation was one of three chari-ties which benefitted from AlGeiberger’s 20th AnnualInvitational at the Desert FallsCountry Club on April 23-24.

Ken Venturi, past chairman ofNational Stuttering Awareness Week,was this year’s honoree at the tourna-ment, hosted by Geiberger.

“On June 10, 1977, Al Geibergershot a score of 59 in the DannyThomas golf tournament,” said BobFoote, assistant tournament organizerand longtime friend. “The score of 59was the lowest competitve round byany pro golfer ever. It was a remark-able achievement. So, some friends ofAl’s started this tournament to cele-brate that sensational score. Part of the

gest Joy as a commencement speaker?“I didn’t, the president recommend-

ed her,” Bloom responds. “He [Dr. R.Mark Sullivan] said, ‘How do youthink Joy would be. Do you think shecould do it?’ I said, ‘I’m sure shecould!’ When it was over, all 2000people stood and gave her a standingovation. It was so moving and she didit so well.”

Contact Sister Charleen Bloom at518-454-5122 or Dr. DonnaCoooperman at 518-458-5357. TheSt. Rose program is open to children,teens, adults, parents and siblings.SLPs are welcome to observe.

For information about other pro-grams, go to www.stutteringhelp.organd click on Resources, thenReferrals. Programs are listed by stateand/or country.

SUMMER 2004 51-800-992-9392

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“Mr. 59” and Ken Venturi Score withPalm Desert Golf Benefit for SFA

SFA poster with KenVenturi promotingstuttering awareness.

The cover of 1964Sports Illustrated.

Empowered SpeechContinued from page 2

who stutter. The students at Purdue,for whom this is a senior project, havethoroughly researched the “human ap-plication”—what works for kids ingrades 2-6 as far as memory retention,characters they relate to, attentionspan, ad infinitum.

The background research had to berigorously defended to a board of pro-fessors before Swish got past thesketchbook stage, according to Ali, asenior from Bahrain who dreams ofbecoming “the Steven Spielberg of theMiddle East.”

“To create Swish, the first step isconcept art, drawings and storyboards

all by hand. The next step is to modelhim using a 3-D program like MAYA,”says Ali. “Because he’s a basketball,we create him in a series of spheres.Texturing is the process of taking thematerial the character would be madeof and slapping it on him—skin like abasketball, eyeballs. It’s the texturingthat gives personality.”

The result of this wizardry is Swish,a bouncy, genderless, cartoon with akid’s voice and vocabulary, who popsin and out of the video, asking ques-tions such as, “Does stuttering everbug you?” that are answered by chil-dren who stutter.

Who can resist?“Not kids who stutter, if our research

is right,” said Michelle, an interactivemultimedia development major whosecomputer coding skills, combined withanimation, bring Swish to life.

“I’m primarily here to work in thehuman research subjects,” Michelleadded. “We have to test this on chil-dren to see if they like Swish and seeif it works. That’s ultimately what wewant—for it to be effective.”

To ensure that Swish is, he’ll befield tested with children in the speechclinics at Purdue and Florida StateUniversity.

Swish Scores With Kids Who Stutter in New DVD Continued from page 1

Continued on page 12

To donate electronically go to theSFA’s Give Page online at www.stut-teringhelp.org. Or give by phone andcredit card by calling 1-800-992-9392.

By mail, you may send a check to:The Stuttering Foundation, 3100Walnut Grove Road Suite 603, P.O.Box 11749, Memphis, TN 38111-0749.

Please indicate that your gift is as-sociated with the Nick BrendonBirthday Project.

Book for Pediatricians� A new edition by Barry Guitar, Ph.D.,the University of Vermont, and informa-tion reflecting the latest neurological andgenetic research introduces the subjectof stuttering in the new third edition ofthe child who stutters: a guide for pedi-atricians. Book 0023, which includes auseful chart to help determine the needfor early intervention, is available fromthe SFA for $2.00 or may be download-ed for free.

For Teens� Teenage yearscan be tough, espe-cially for someonewho stutters. DoYou Stutter: AGuide for Teensoffers real help to

make life better. Book 0021, a 72-pagebook, is available for $2.00 by catalog oronline.

If You ThinkBrochure� If You Think YourChild is Stuttering ispacked with infor-mation to help parents understand thedifference between normal disfluencyand stuttering. With the addition of a riskfactors chart and a “How to Help RightAway” section, the brochure is evenmore useful for parents trying to to helptheir child immediately, while determin-ing the need for professional interven-tion. “Seven Tips for Talking” offer ex-cellent advice on speaking to any child.Brochure 41 may be downloaded free;$8.00 for 100 copies.

6 www.stutteringhelp.org 1-800-992-9392

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Actor’s Ongoing Support for Stuttering

Once again, Nicholas Brendonfans are reaching out to wish Nick ahappy birthday and to help the SFA!

Nick’s birthday is April 12, butyou can still contribute afer that dateand be part of the Nick BrendonBirthday Project 2004. More impor-tanly, you can still directly help thosewho stutter, and wish the actor ahappy birthday at the same time.

Nick has a lot going on right now,with a new made-for-TV movie,Celeste in the City, that aired inMarch on ABC family, and other pro-jects. (Check it all out at his Web site,www.NickBrendon.com.) Still, he’salways been right there for otherswho stutter through his support ofand outreach for the SFA.

Since 2001, Nick has served as aspokesman for the StutteringFoundation of America. In that time,visitors to his Web site have con-tributed more than $5,000 to TheStuttering Foundation.

Helping the SFA has been a verysignificant outcome of Nick’s role onBuffy the Vampire Slayer. Here’s ourchance to acknowledge all he’s done!

Stanford Dean Piazzo and Gina Perez-Baron.

Gina Perez-Baron is a student atStanford University School ofMedicine. Her poem is at newsletterat www.stutteringhelp.org

Stuttering Doesn’t Stop MeI am a third year medical student

at Stanford University School ofMedicine. I don’t know how much Iwould say I’ve “overcome” stutter-ing, but it no longer stops me frompursuing the life I want.

I stuttered terribly as a child. I’dtry to hide it or sit in silent frustra-tion as someone else stood up andclaimed my words. As a teenager,my speech improved but I still hatedit and, at times, hated myself for it.

I was in my twenties when some-thing shifted. Sick and tired of stut-tering and feeling sorry for myself, Isaw an ad about a “cure” for stutter-ers. Great! Then I found the cost,$2,500. I had to find another way.

So, I started trying to accept mystuttering. Accept. Now, there’s aword that really stuck in my throat!But what else was there? Slowly, Itried hiding it less. I tried announc-ing, “I stutter” when the struggle gottoo great. I stopped avoiding tele-phone calls. I started speaking up.

Sometimes my speech wassmoother. Sometimes people no-ticed it less. I still stutter, but I’m notElmer Fudd. People tell me it takesa while for them to even notice.

I’ve taught myself a few strate-gies that help. Public speaking re-mains the worst. But today, it’s justmy unique “thing.” And I see thateveryone’s got their own “uniquething”—something to struggle with,to overcome.

These days, stuttering doesn’thold me back so much; I’m not soafraid. And fear was, and remains,my biggest obstacle. Getting pastthat, I’m able to do the things I needto so I can be what I want to be.

Updates Reflect New Gains in Knowledge

Risk Factor What tolook for

True for my child

Family historyof stuttering

A familymember whostill stutters

Age at onset After 3 1/2

Time sincefirst noticedstuttering

Stuttering 6-12months or

longer

Other speech-language delays

Speech errors,trouble following

directions

Risk Factors Chart

THESTUTTERINGFOUNDATIONPUBLICATION NO. 0021

�

do you stutter:a guide for teens

F O U R T H E D I T I O N

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New Album, “RightFullySpoken” for PWS� Frankie Jones has released a new CD,“RightFully Spoken,” for those whostutter. “I am a PWS and have dedicatedmy music and life to uplifting and moti-vating those who stutter,” writes theLincoln, NE, musician. A popular per-former in public schools, Frankie’s sin-gle, “Man in the Mirror” is well-knownin the stuttering community. For infor-mation, call the SFA at 1-800-992-9392.

Invest inKids SelectsSFA WebSite as a “Five Star”Resource for Parents� “Our experts at Invest in Kids haveselected your web site, www.stutter-inghelp.org as an important resourceof parents of children under five!”wrote Chris Geady to tell us abouttheir “Five Star Recommendation” ofSFA’s site. Invest in Kids is a non-profit organization which helps fami-lies make the most of their children’sfirst five years: “The years before fivelast the rest of their lives.”

NSSLHA Chapters Donate� Thanks to the University of NorthKansas and Nicholls State Universitychapters of the National StudentSpeech-Language Hearing Associa-tion, which recently sent gifts to theSFA. Nicholls State is in Thibodaux,LA, and UNK is in Kearney, NE.

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News Shorts

SUMMER 2004 71-800-992-9392

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Acting Out for NSAWContinued from page 3

young people who stutter. And ofcourse, we need to raise a little bit ofmoney.”

Taro’s experience as a personwho stutters, combined with thetransformative power of theatre,compelled him to create Our Time.A successful actor himself—now inthe cast of the off-Broadway pro-duction of STOMP—Taro’s goal isto help others who stutter find a safeplace to express their creativity, tofind their voice in performing.

Members study acting, singing,playwriting, drumming and dancewith professional artists. No perfor-mance experience is required andthere are no fees to join, hence, inpart, the reason for the benefit.

“Our Time provides an environ-ment free from ridicule whereyoung people who stutter discoverthe joy of creating and performingoriginal theatre,” notes gala hostJane Alexander, Emmy-award win-ning actress of film, stage and tele-vision. Alexander first won acclaimfor her Tony-winning role in TheGreat White Hope with actor JamesEarl Jones, who also stutters.

“Our Time provides a powerfulway for the audience—families,friends, professionals—to begin tofeel and understand the challenge ofthose living with stuttering,” saidLee Caggiano, executive director ofFriends: The Association of YoungPeople Who Stutter. “Taro Alex-ander has given voice to stories thatmight otherwise have gone untold.”

For more information call oremail Our Time at 212-414-9696 ormoreinfo@ourtimetheatre.org orSFA at info@stutteringhelp.org.

Two-Day WorkshopStuttering Therapy: Practical Ideas

for the School Clinician� June 11-12, 2004 in Cincinnati, OH

Two-Week WorkshopStuttering Therapy: Workshop for Specialists

� June 2005 in Iowa City

� All Five-Day Workshops are filledApplications may be downloaded from

www.stutteringhelp.org or call 1-800-992-9392

Upcoming Workshops

Donny Sethl works on a song withmusical director Everett Bradley. “If Idon’t talk, they take a part of me,”says the Greenwich, NY teen.

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The Stuttering Foundation of America isa tax-exempt organization under section501(c)(3) of the Internal Revenue Codeand is classified as a private operatingfoundation as defined in section4942(j)(3). Charitable contributions andbequests to the Foundation are tax-

deductible, subject to limitations under the Code.

While his recent study involvedmore than 50 families from acrossNorth America, Drayna is pursuingadditional studies elsewhere in theworld. A previous article in the SFAnewsletter documented one familyunder study in Cameroon, WestAfrica, and recent efforts have takenDrayna to Pakistan, where the highnumber of cousin marriages presentparticularly favorable conditions forgenetic studies of stuttering.

Drayna cautions people not to ex-pect quick cures from this research.“Our goal is to use genetic studies tounderstand at least some of the under-lying causes of stuttering. While notall stuttering is genetic in nature, welook forward to unraveling this part ofthe puzzle of stuttering, which willhopefully lead to better treatments inthe future,” he notes.

Genetics Gain GroundContinued from page 1

SA Scholarship BenefitsPWS Down Under� The International StutteringAssociation in Perth, Australia emailedits thanks for all those who contributedto their scholarship fund, and sent aphoto of everyone from outsideAustralia who was able to attend theirgathering. “I am sure that your contribu-tion will not be forgotten in a lot ofplaces around the world,” writes StefanHoffman of the ISA. “Thanks again.

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and effectiveness of electronic auditoryfeedback devices. While the article in-cluded quotes from satisfied users, includ-ing those who had used their device suc-cessfully for more than a year, the overallgist was that electronic auditory feedbackdevices are in fact not a “magic bullet.”

As the president and CEO of one of theleading providers of such devices, it maycome as some surprise that I agree withthis conclusion… electronic devices arenot a “cure” for stuttering. Instead, theyoffer a technologically advanced treat-ment option that can help people who stut-ter speak more fluently with less effort. Assuch, it is important that anyone consider-ing such a device be able to separate factfrom fiction.

A key to clearing up misconceptionsabout these devices is to understand wherethey fit on the continuum of availabletreatment options. Stories in the newsmedia tend to provide an oversimplifiedview, proclaiming AAF devices as “mira-cle cures.” As speech fluency profession-als, we must do a better job communicat-ing the benefits and limitations of AAFdevices. To this end, new and upcomingresearch data published in peer-reviewedscientific journals provides some valuableinsight.

A study published last year in theInternational Journal of LanguageCommunication Disorders (Vol. 38) test-ed the efficacy of the device calledSpeechEasy, which was referenced inSFA’s previous newsletter article. Thestudy subjected seven users to a variety oftests, and reported that the device reducedstuttering significantly while helping toproduce speech that was more natural.

While the study provides many valu-able answers, it also raises some ques-tions. Foremost among these is the long-term efficacy of such devices, given thatthe study subjects were followed for justfour months after being fitted.

What the already reported data showsis that when used in conjunction with con-ventional therapy, the SpeechEasy AAFdevice enhances the rate of progressamong patients, and is a valuable new toolfor SLPs to consider in concert with othertherapeutic options.

Darwin RichardsCEO, Janus Development Group(SpeechEasy)

Dear SFA:If the SpeechEasy is being marketed as

a cure, that is wrong, but as a tool, I findit very helpful. I spoke today at lunch to alarge group of advertisers. It helped me tocontrol my gentle onsets more effectivelyand I had fewer blocks than usual. I real-ize those in search of the magic pill willbe disappointed, but as a tool, it is im-mensely valuable to me.

I complained of its price, also, but I’mcomfortable the company has investedmuch in its research beyond the manufac-turing cost of the device.

My clinician, Helen Duhon ofFranklin, Tenn., thought long and hardbefore she began handling the device. Sheis a Vanderbilt speech therapy grad who istrying to interest them in further study ofthe device.

You are wise to warn against the de-vice as a “cure,” but as a tool I think it hasmuch to offer. The SFA performs a valu-able service and there are scams out thereto be wary off. I don’t think theSpeechEasy device is one of them—but itcertainly is not a cure.

Vince Vawter, INEditor, Evansville Courier & Press

Hi SFA, I am a school based SLP, employed by

an intermediate school district. We havehad many parents of children who stutterinterested in auditory feedback devices.Our assistive technology department hasdecided to purchase a Fluency Master fora student through Michigan StateUniversity.

I have a great interest in stuttering andhave agreed to analyze and provide datafor the ISD to determine the effectivenessof these devices. Personally, I do not thinkit is wise for schools to purchase these de-vice, as they may be unleashing some-thing they cannot control. They are cost-ly devices that have little empirical evi-dence that support their efficaciousness.

I am reviewing and analyzing videosof the students before the Fluency Master,at the introduction of the Fluency Master,and 2-3 months after initial use.

Alisa MacDonald, M.S., CF-SLPBattle Creek, MI

Dear SFA:The Winter 2004 edition of SFA’s

newsletter reported the results of a surveythat appeared largely critical of the appeal

8 www.stutteringhelp.org 1-800-992-9392

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Letters: Reader Response to Survey on Electronic DevicesDear SFA,

I commend your survey about elec-tronic anti-stuttering devices. However,the survey showed that persons who stut-ter have misconceptions about the de-vices.

The most common reason cited for notbuying a device was “expense/lack of in-surance.” Since 1992, Casa FuturaTechnologies has helped every Americanconsumer who has needed our devices, re-gardless of his or her ability to pay.Survey results included a complaint abouta “$700-800" fee and “90% money-backguarantee” apparently charged by anothercompany. Casa Futura has always offereda 60-day, 100% money-back guarantee.

Respondents “cited concerns over lackof long-term research on devices.” TheInternational Journal of Language andCommunication Disorders (2003, Vol. 38,No. 2, 119-129) recently published a long-term study of our least expensive devices.Researchers tested nine severe adult stut-terers before using the devices, and againthree months later. The subjects used thedevices about thirty minutes per day. Thesubjects’ stuttering diminished 50%,without any other speech therapy.

One respondent complained about hisdevice being difficult to use in noisy envi-ronments. Hearing safety is a paramountconcern. Users who experience ringing intheir ears or headaches should discontinueusing their device and get their hearingchecked. It’s also possible that overuse ofan anti-stuttering device could cause achild’s auditory processing to develop ab-normally. To minimize hearing impair-ment, anti-stuttering devices have a vari-ety of noise-reduction features.

The last comment was telling. A moth-er wrote, “I’m most disappointed. Itwasn’t a quick fix. Since it wasn’t, [myson] quit using it.” That isn’t the device’sfault! Successful stuttering treatment re-quires hard work over a long time. Thedevices can be of great value when usedas part of a larger stuttering therapy pro-gram. Anyone looking for a “quick fix” islikely to be disappointed.

Thomas David KehoeOwner, Casa Futura Technologies □

Editor’s Note: The Stuttering Foundation ofAmerica welcomes your response; however,due to space constraints, we reserve the rightto edit articles for length. Address your lettersto info@stutteringhelp.org or The StutteringFoundation, 3100 Walnut Grove Road, Suite603, Memphis, TN 38111.

The SFA was invited to have a table ofpublications at both.

On April 3, Charley Healey,University of Nebraska, spoke at theOklahoma state gathering in Edmonds.

SLP Darla Benoit vol-unteered to man a tableof SFA publications.

“It was fun workingat the SFA table andhearing all the positivecomments about theFoundation,” Benoitsaid. “I’m so proud andgrateful to be involvedwith it.”

Lisa Scott Trautman, Florida StateUniversity, spoke in St. Louis, spon-sored by Friends. Lisa talked about theCALMS model, answering questionsand personalizing the talk to meet ther-apist’s needs, reported SLP SusanShort. Lee Caggiano spoke to parentson Stuttering 101, and Lee, IreneBullard and Susan facilitated parentroundtable discussions.

Barry Guitar, University ofVermont, distributed SFA materialwhen he spoke in Norfolk, VA, at aconference organized by Kim Stallings,former SFA Workshopper.

cluding If Your Child Stutters: A Guidefor Parents, The School-age Child WhoStutters: Working Effectively withAttitudes and Emotions, Integration of

Contemporary Therapies,Sometimes I Just Stutter, andmagnets,” Hatcher said.

SLP June Haerle-Campbell and her husband,Allen, represented the SFAat the California Speech-Language Hearing Associa-tion annual conference inMarch in Long Beach.Workbooks and magnetswere hot items, disappearingquickly from the booth,which also drew people sim-ply to thank the SFA for pro-viding such affordable mate-rials.

March 5 -6,the TacomaPublic SchoolDistrict and

the Tacoma/South PugetSound chapter of theNSA sponsored a work-shop for therapists, fol-lowed by a Family Day.

SUMMER 2004 91-800-992-9392

Packed rooms, enthusiastic partici-pants and engaging speakers have gath-ered around the country to learn aboutstuttering. SFA has been there to help,including, at press time, atrip to San Antonio for theTexas Speech-LanguageHearing Association confer-ence.

In Long Beach, CA,SFA’s Deborah Squires andSLP Liz Brown manned abusy table at the L.A.United School’s conferenceon stuttering. The eventdrew nearly 600 speech-lan-guage pathologists.

About 700 SLPs—arecord number—attendedthe annual conference spon-sored by the The Universityof Memphis chapter ofNHSSLA, with guest speak-er Bill Murhpy, PurdueUniversity. SFA staffersLaura Beauchamp and Lorissa Hatcherhosted a booth in SFA’s hometown inMarch.

“We sold out of lots of things and hadto run back to the office for more, in-

The fluency game’s in the bag for Garrett andRobert in SLP Mary Turcotte’s group on FamilyDay at Tacoma’s two-day event, March 5-6.

Vivian Sisskin, of theUniversity of Maryland,spoke March 5 on“Problem Solving inStuttering Therapy,” at-tended by about 350 SLPsfrom Washington state.

Seminars Attract Hundreds to Learn About Stuttering

Annual Audit of Foundation by KPMG

SLPs Doug Wing and ConnieHaines of Tacoma, WA.

You can donate to theStuttering Foundation directlythrough the United Way. Direct

designation allows you tospecify your gift to the SFA.Proof of nonprofit status canbe sent to your employer by

fax, mail or email.

Give the United Way

The annual audit of The StutteringFoundation financial reports for 2003was recently completed by the ac-counting firm of KPMG. Following isa recap of funds and expenditures forthe year.

The 4.0% of expenditures for ad-

ministration and general expenses andthe 6/10 of 1% for fund raising are verylow, and since we are fortunate to havean endowment which more than coversour overhead expenses, donors can beassured that their gifts will go directlyto support our program services.

Funds expended for:Creation, production, printing and distribution

of educational materials . . . . . . . . . . . . . . . . . . $556,589 . . . . . 49.8%Public information and education . . . . . . . . . . . . $236,261 . . . . . 21.1%Educational symposia for professionals and

research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . $176,695 . . . . . 15.8%Maintain Web site and toll-free stuttering

information hotline . . . . . . . . . . . . . . . . . . . . . . $ 96,902 . . . . . . 8.7%Total for Program Services: . . . . . . . . . . . . $1,066,446 . . . . 95.4%

Other expenditures:Administration and general . . . . . . . . . . . . . . . . . $45,000 . . . . . . 4.0%Fund raising expense . . . . . . . . . . . . . . . . . . . . . . $6,934 . . . . . . . .6%

Total Expenditures: . . . . . . . . . . . . . . . . . . . $1,118,386 . . . .100.0%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.

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The team has finished lighting thescenes for shadow and depth and headsinto a week of intensive animation.

Rich is the lead animator, so it’s histurn to shine, lip-syncing Ali’s com-puter-altered voice, making sure eye-brows move, adding the hundreds oftouches that make up the gigabytes’worth of memory that is Swish.

“We have 14 scenes between [live]footage segments,” noted Helen, sothe pace back and forth is quick.

Then it’s to the desktop equivalentof a film cutting room floor for editing.

“The final thing is called render-ing, and you take the animation thatwe have and convert it into a movieblock, and then the editing and com-posing comes last,” Ali said.

Here, Swish finally gets to meethis live friends, who together, havemade this video by kids, about kids,for kids who stutter.

12 www.stutteringhelp.org 1-800-992-9392

communication or public speaking skills, theiraddress is: Toastmasters International, Inc.,Attention: Membership Department, P.O. Box9052, Mission Viejo, CA 92690, Telephone:(714) 858-8255; Fax: (714) 858-1207.■ For those wanting to obtain a copy of Self-Therapy for the Stutterer in Japanese, write toDr. Shokichi Nakajima, 2-21-1 OgawaMachida-shi, Tokyo 194, Japan,telephone/fax: 0427 (96) 5092.■ Self-Therapy for the Stutterer is available inFrench. Write to the Association des Beguesdu Canada, 2596 A rue Chapleau, Montreal,Quebec, Canada, H2K 3H6; 1-877-353-1042.Please enclose $20.00 Canadian to coverprinting, postage, and handling costs.■ For those wanting to obtain a copy ofStuttering and Your Child: Questions andAnswers in Hindi, write to: Dr. Sajiv Adlakha,Adlakha Speech and Hearing Clinic, A67Dayanand Colony, Lajpat Nagar - 4, NewDehli-110024, India, or e-mail:adlakhas@hotmail.com Those interested injoining a fluency and public speaking skillsgroup should also contact Dr. Adlakha at theabove address.

■ Understanding Stuttering, Nathan Lavid,M.D. Available by calling 800-737-7788.University Press of Mississippi, Jackson, MS;www.upress.state.ms.us. 2003.■ Beyond the Last Village and Jaguar: OneMan’s Struggle to Establish the World’s FirstJaquar Preserve by Alan Rabinowitz.Available from Island Press, Washington,D.C.; www.islandpress.org.■ Stuttering Therapy: Rationale andProcedures by Hugo H. Gregory, June H.Campbell, Diane G. Hill, and Carolyn B.Gregory. Available from Allyn and Bacon,Boston, MA; www.ablongman.com. 2003.■ Les begaiements: Histoire, psyhologie, eval-uation, varietes, traitements by Anne Van Houtand Francoise Estienne. Published by Masson,S.A.,120 boulevard Saint Germain, 75280 ParisCedex 06, France.■ Forty Years After Therapy: One Man’sStory, by George Helliesen, M.A. Availablefrom Apollo Press, Inc., 1-800-683-9713 or on-line at www.apollopress.com.■ Programmed Stuttering Therapy forChildren and Adults, (2001) by Bruce Ryan,Ph.D. Available through publisher Charles C..Thomas or on-line at www.amazon.com.■ Making a Difference for America’sChildren: SLPs in the Public Schools, byBarbara Moore-Brown and Judy Montgomery.Available from Thinking Publications, EauClaire, WI. 715-832-2488.■ Ben Has Something To Say by Laurie Lears,illustrations by Karen Ritz. A book for childrenages 5-9. Albert Whitman & Co., MortonGrove, IL. 800-255-7675.■ Sharing the Journey: Lessons from myStudents and Clients with Tangled Tongues byLon Emerick, Ph.D., available from NorthCountry Publishing, 355 Heidtman Road,Skandia, MI 49855 for $13.95 plus $2.00postage and handling. Call toll-free 1-866-942-7898, or visit www.northcountrypublish-ing.com.■ Living With Stuttering by Kenneth St. Louis,Ph.D. Available from Populore PublishingCompany, P.O. Box 4382, Morgantown, WV26504, 304-599-3830.

Books on Stuttering or RelatedTopics Available from Bookstores:

■ The Stuttering Foundation two-dayconference for speech-languagepathologists working with school-agechildren who stutter, Practical Ideasfor the School Clinician, will be heldJune 10 and 11, 2004, in Cincinnati.For an application form, contact theStuttering Foundation at 1-800-992-9392 or download it directly atwww.stutteringhelp.org. ■ The Stuttering Foundation WesternWorkshop, Diagnosis and Treatmentof Children who Stutter: PracticalStrategies, directed by SusanHamilton, M.A., Jennifer Watson,Ph.D., with David Prins, Ph.D., will beheld at the University of Washington,Seattle, June 23 - 27, 2004.■ The Stuttering Foundation Southern

Workshop, Diagnosis and Treatment ofChildren Who Stutter: Practical Strategies,directed by Lisa Scott Trautman, Ph.D.,Kristin Chmela, M.A., and Joe Donaher,M.A., will be held at Florida State University,June 23 - 27, 2004. ■ The Stuttering Foundation two-weekWorkshop for Specialists will be held at theUniversity of Iowa, Iowa City, Iowa, in June,2005, directed by Patricia Zebrowski, Ph.D.and Toni Cilek, M.A. For more information,contact the Stuttering Foundation at 1-800-992-9392, or write Dr. Zebrowski, c/o SFA,3100 Walnut Grove Road, Suite 603,Memphis, TN 38111-0749. This unique work-shop brings together speech-language pathol-ogists from all over the world.■ Clinical Training in Lidcombe Program: ABehavioral Intervention in Stuttering forYoung Children. This workshop featuringElisabeth Harrison will be held June 16-18,2004, at the University of Vermont. For moreinformation, please contact Rosalee Shenkerat the Montreal Fluency Centre,rosalee@montrealfluency.com.■ FRIENDS, The National Associationof Young People Who Stutter, will holdtheir annual convention in the SanFrancisco Bay area from July 22-24,2004, at the Marriott Hotel at the SanMateo/San Francisco Airport. Please con-tact FRIENDS2004SF@aol.com or 1-888-866-8335 for information. A regis-tration brochure can be downloaded fromthe website www.friendswhostutter.org.■ To participate in a study on client sat-isfaction with stuttering therapy, pleasecontact Walter Manning, Ph.D., at wman-ning@memphis.edu.■ For those wanting to purchase a posterentitled The Bill of Rights andResponsibilities of PWS, contact MichaelSugarman at MSugarman1@aol.com. Itrepresents the combined effort of the IFAand ISA.■ LISTSERV for doctoral students specializ-ing in stuttering. The intent of this list is toserve as an open forum for doctoral students.Membership is limited to doctoral studentsonly. To subscribe, send the following mes-sage to listserv@listserv.temple.edu: sub-scribe stutterdoc firstname lastname" or con-tact Joe Donaher at turtlecraw@aol.com.■ For those interested in joining ToastmastersInternational as a way to improve fluency,

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STUTTERINGFOUNDATIONTM

A Nonprofit OrganizationSince 1947 — Helping Those Who Stutter3100 Walnut Grove Road, Suite 603P.O. Box 11749 ● Memphis, TN 38111-0749

1-800-992-9392 ● 1-800-967-7700www.stutteringhelp.orginfo@stutteringhelp.org

Swish ScoresContinued from page 5

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NW Workshopper’sDeath Leaves Loss

One of the all-time favoriteworkshoppers, Andre Courcy,died on March 15, 2004, of pan-creatic cancer. Services were heldin Quebec on March 19.

A member of the SFA’sNorthwestern University Work-shop Class of 1997, Andre wasremembered with fondness byworkshoppers.

“I laughed so hard with himthat I would have tears rollingdown my eyes. I am sure his fam-ily and friends will miss him ter-ribly,” said Susan Hamilton, SLP.Donations in memory of Andrewill fund a scholarship to theWorkshop for Specialists.