SUMMER 2004 THE S TUTTERING Nick Brendon Birthday Bash World’s Largest Tiger Reserve Empowered: A Success Story FOUNDATION From Washington to Kenya Golf Tournament Benefits SFAA Nonprofit Organization 1-800-992-9392 www.stutteringhelp.org Since 1947... Helping Those Who StutterNew “Kids for Kids” Why stop at just speaking out? This year we’reDVD Stars Swish andHis Young Friends Who better than kids to talk to other kids about talking? ACTING OUT for National Well, maybe a bas- ketball named Swish. Stuttering Swish!—it’s a win- ning sound in hoops, Awareness and now it’s the name of Week! a winning cartoon char- acter created to teachkids about stuttering. Swish, an animated basketball withengaging, human-like features, is oneof the stars—along with his younghuman friends—in the StutteringFoundation’s new DVD by kids, aboutkids, and for kids. Our Time company members Linda Gjonbalaj, Jonathan Greig, Corom Buksha and David Nachman, Swish is the creation of students AliModara, Helen Kang, Rich Sun, andMichelle Jackson in the Computer Theater Stages Benefit Gala forGraphics Technology Department atPurdue University, under the direction National Stuttering Awareness Week If actions speak louder than words, with cast members of STOMP, musicalof Dr. Mark Bannatyne, head of the this year, the message of the Stuttering director Everett Bradley, host actressdepartment. The speech-language Foundation and others should be loud Jane Alexander, the Our Time Teens,pathology team is comprised of Lisa and clear. special honoree Dr. Alan Rabinowitz,Scott-Trautman, Bill Murphy, Kristin Our Time Theatre in New York City and SFA president Jane Fraser, among is hosting a gala to mark National others. Stuttering Awareness Week, May 10- “This marvelous event is a kick-off 16. Participants will celebrate May 10 Continued on page 3 Genetic Studies Gain Ground With the publication of a study in factors in stuttering are significant the American Journal of Medical enough that it’s possible to identifyFrom left, Purdue University students Ali Genetics, understanding of the genet- specific genetic factors.Modara, Helen Kang, Rich Sun, and Michelle ic causes of stuttering has “While we have a way to goJackson, creators of Swish! moved one step forward. before we can identify thisChmela, Lee Caggiano, and Joe The report, entitled “Results gene, we are encouraged thatDonaher. Between them, they are cre- of a Genome-wide Linkage progress is being made,” saidating a fun, entertaining, and highly Scan for Stuttering,” demon- Dennis Drayna, Ph.D., senioreducational DVD for kids ages 7-11, strates that a gene on chromo- author of the study. Dr. Draynawith much serious work behind the some 18 in humans can have a is pursuing his studies at thelight-hearted approach. strong effect on the development of National Institute on Deafness and The SFA team has been working persistent stuttering. While the gene Other Communication Disorders,throughout the year on the concept itself has not been identified, this part of the National Institute ofand script and on videotaping children study demonstrates that inherited Health in Bethesda, MD. Continued on page 5 Continued on page 7
2 www.stutteringhelp.org 1-800-992-9392Empowered Speech Triumphs Over Lifelong Stuttering Joy Emery, 64, has stuttered for leadership roles. She is particularly Emery’s speech when she started, “Wemost of her life. But she delivered the grateful for Dr. Charleen Bloom and worked on fluency targets as well ascommencement address in clear, flu- Dr. Donna Cooperman, professors in all the attitudes. She’s to the point nowent sentences that so captivated her au- the Department of Speech Sciences that she’s gone from hiding from peo-dience that they sat in utter silence be- and Communication Disorders. ple to being in leadership roles withinfore erupting in applause as she “Our approach is a synergistic the community and Council, with thereached her triumphant conclusion. one,” explains Sister Char, the pre- SFA and other places. She’s been Joy has much to say on the topic of ferred title of the Sister of St. Joseph. teaching the class with us for aboutempowerment, the subject on which “We integrate fluency shaping and eight years. The students get a greatshe was asked to speak at the gradua- stuttering modification, and we inte- mix. Everything we teach about stut-tion at the College of St. Rose in grate speech and language compo- tering, Joy explains how it affects herAlbany, NY. That she was able to say nents, attitudinal components and en- life.”it so well is a tribute to her own vironmental components. We believe The support group, whose member-“tremendous recovery” over the that you can’t do a program without ship is fluid, was important for herspeech disorder that, in her own sustained fluency, sayswords, significantly curtailed Joy, who had been through aher life. number of other programs, be- “Empowerment comes from ginning in childhood. Aftertaking good risks and making a early failed attempts at thera-few mistakes in order to gain py—which included changingsuccess,” Emery told graduates her orientation from left-hand-and guests gathered on ed to right and then back againDecember 20. “Don’t be afraid and a program in which sheto make mistakes; you’ll proba- was taught to speak and chewbly make quite a few before gum at the same time—Joyyou’re through. Most of us do.” avoided therapy until she was The words were especially in her 40s. A three-week preci-poignant, because until 10 sion fluency-shaping courseyears ago when she was re- worked briefly, but withoutferred to the college’s fluency lasting effect.program, Emery was so afraid “I came back fluent, but Iof making mistakes that she fell right back,” Joy says. “Theavoided speaking to anyone Joy S. Emery, who has stuttered for nearly 64 years, was College of St. Rose started meother than family. the keynote speaker at the College of St. Rose, Albany, NY, with a very low hierarchy: easy “In the past, stuttering domi- commencement. She received an honorary doctorate. speaking situations, graduallynated my life, because I experi- getting tougher and tougher allenced so much fear, embarrassment, that.” the time. What they did was to workshame and exhaustion,” Emery said in This holistic approach to speech on my fluency so that I was stable. At therapy has been in existence at the the same time, we had a self-help college since Bloom initiated the pro- group where I was able to practice my“I allowed stuttering to dictate gram in 1971 with a group of about 19 fluency.”my social life, who my friends people. A weekend workshop eachwere and how I spent my time.” March for those who stutter, now in its “Not in my wildest dreams did 29th year, was added next, followed I expect that my journey toher address. “I felt different from all of by teen and children groups, a parent fluency would lead to a 180my peers and so I developed a cozy lit- group, and the addition of a sibling change in my life.”tle place called my “comfort zone” group this year. The groups embracewhich gave me protection, a pre- both self-help and therapy practices, Simultaneously working on atti-dictable life, and insulated me from notes Sister Char, who has managed tudes and feelings as well as communi-the pain of making mistakes. I felt im- the program largely on her own. Two cation and socialization skills made theprisoned with deeply engrained nega- years ago, she was joined by Dr. difference, Joy says. “The environmen-tive feelings about my speech and, Cooperman, with whom she has co- tal component helped me to understandmoreover, about myself.” authored a textbook based on this the family situation, and the team Emery credits the fluency program model. (See Books , page 12.) teaching—telling my story—helped aat St. Rose with empowering her to Joy, who began as a client at the col- great deal. As a result, I gained anot only say what she wanted to say, lege’s Pauline Winkler Center, now tremendous fluency, but also a tremen-but also with giving her a sense of team-teaches the graduate fluency class. dous recovery.”freedom and the confidence to take on “She was severe,” Bloom says of Still, what made Sister Char sug- Continued on page 5
SUMMER 2004 1-800-992-9392 3SFA Board Member Helps EstablishWorld’s Largest Tiger Reserve We have long said that “if you stut-ter, you’re in good company.” That’s Continued from page 1because many of those who stutter ac- to celebrate everyone’s efforts to in-complish tremendous things in life. crease awareness.” said Fraser, who Take, for example, the estab- will be introducing Rabinowitz, SFA lishment of the world’s Board member and this year’s Our largest tiger reserve, ac- Time Award winner. “Alan is an out- complished this March standing spokesperson for NSAW under the leadership of 2004. It’s exciting to see so much of SFA Board member Alan his hard work in other areas of his life Rabinowitz, Ph.D., director coming to fruition this same year.”of the Science and Exploration (See related story, this page.)Program at the Wildlife Conservation The evening begins with a cocktailSociety (WCS). reception at 6 p.m. at the Andavi Cafe, The government of Myanmar, for- then moves to the Lucille Lortelmerly Burma, recently announced the Theater for an 8 p.m. performance bycreation of the reserve, which covers a the Our Time Teens, the cast ofland area nearly as large as Vermont. STOMP, Adam Pascal, Alice Ripley,It’s a project Rabinowitz has been and musical director Everett Bradley.working on for 10 years. Our Time Theatre is a nonprofit or- National Public Radio’s Renee ganization dedicated to providing anMontagne interviewed Rabinowitz artistic home for young people andfor a special that aired March 15 on agement strategies and how the WCS adults who stutter.Morning Edition. (Interview and and Myanmar’s forestry department The purposes of this event are man-photos available at www.npr.org/pro- will work together to make the world’s ifold,” said Artistic Director andgrams/re/archivesdate/2004/mar/tige largest tiger reserve a reality. founder Taro Alexander. “We want tors/) An article also appears in the This is not the first reserve that has increase awareness about Our TimeApril, 2004, issue of National resulted from the zoologist’s efforts. Theatre, about National StutteringGeographic magazine. The Society’s web site Awareness Week, the Stuttering Rabinowitz’s many visits to (www.wcs.org.) documents work Foundation, and about stuttering inMyanmar’s Hukwang Valley— done by Rabinowitz and the general.as well as his struggle with stut- Society’s Jaguar Conservation “We want to begin the tradition oftering—are detailed in his Program team to establish a safe having a wonderfully inspiring, publicbook, Beyond the Last Village. corridor for jaguars spanning 14 event on the first day of National(Island Press, see Books on page 12.) countries, from Arizona through Stuttering Awareness Week where His first visit was in 1993, and in Central America and into northern people can come together and cele-1999 he surveyed the tiger population, Argentina. brate. In short, we want to start theusing “camera traps” to capture on In Search of Jaguars, a National week off with a bang. It’s also a chancefilm the big cats, of Geographic Special for the teenagers at Our Time to speakwhich probably only 100 that aired this past publicly about the challenges that facenow remain. He also November on PBS sta- tions nationwide, also Continued on page 7began working with thecountry’s national parks documents the team’s efforts to protect the New Stutteringdepartment to create, Awarenessthen expand, the wildlife endangered cats. poster fea-sanctuary. The efforts are pay- tures Alan Although the an- ing off. Rabinowitz Rabinowitz.nouncement is a tremen- will be part of a cere- Great fordous step forward, the mony this June in your clinic, Stutterin Wasn’t th g Costa Rica, dedicating End of H e“really hard work,” ac- community, World. is a wildlife sanctuary school, Explorer,cording to Rabinowitz, wildlife cons and auth ervationi or discovere Alan Rabinow st d itz hidden worl new species andhas he didn’t ds. That’s because let stuttering library, or the end become there as part of the of his.is actually just begin- Alan know is worth beyond s that whe achievin reach. n the goa g, nothing is l workplace. Discover what you “necklace” or corridor stuttering can doning. He plans several . abo and ope Write or call us toll-f ut n up your ree, world. Order on- NATIONALmore trips to Myanmar Alan Rabinowitz tags a jaguar. of protected wild places AWARENES STUTTERING For more information about stutteri on ng, write what you can do or call toll-free : S WEEK line or call www.stut terin www.tartam ghelp.org STUT FOUNTERING DAT ION ™to work out details on His work in Belize resulted in the elusive cats call A Nonprofit Organizat udez.org Since 1947—H ion elping Those 3100 Walnut Grove Road, Who Stutter P.O. Box 11749 • Memphis Suite 603 , TN 38111-07 1-800-992- 49 1-800-99 2-9392funding, wildlife man- the first sanctuary for the cats. home. □ 9392.
4 www.stutteringhelp.org 1-800-992-9392From Washington to Kenya: A Journey for FluencyBy Barbara Mathers-Schmidt, Ph.D. prepared for their work together. “Dear Barbara, Only months before, Kevin had been Asante sana kwa kuni julisha ya living on the streets. He was addicted tokuwamaba ni na waza kapona. sniffing glue, and he rarely spoke. He Ni mimi wako, now lives in a comfortable residential Kevin O.” setting with adults who care deeply This handwritten message was given about his well-being and his extraordi-to me by Kevin, a 14-year-old boy who nary potential. This bright, appealinglives in an orphanage in Nakuru, boy readily engaged in the discussionKenya. Through an amazing series of about stammering and seemed relievedevents, I got to know this young man as he learned more about a problem thatwho has a severe stuttering disorder. It had made him feel so hopeless.was an experience that deeply touched The school personnel likewise weremy heart and one I hope will change surprised to learn that something can be Barbara Mathers-Schmidt, Ph.D., andKevin’s future. Kevin study stuttering modifications tools done to help those who stammer. They I had been contacted months earlier in Self-Therapy for the Stutterer. Kevin, who adeptly participated in consideringby a Childcare International volunteer lives in Kenya, never knew there was help strategies to help Kevin. They willwho wondered if I might send some in- for those who stutter. Barbara’s trip to begin by reviewing materials donated Kenya included sharing much-needed re-formation to assist Kevin’s teachers. sources donated by the SFA with schools by The Stuttering Foundation and willThey were perplexed by how to help and hospitals in the region. be meeting regularly with Kevin tothis child who stuttered so severely that practice fluency skills.he rarely attempted to talk. Ironically, I or treat him in a way that makes him While in Kenya, I visited six otherwas planning to travel to Kenya and feel uncomfortable. schools in somewhat remote areas ofwas gathering books and brochures “Did you know that three million the Central District. The schools rangedabout communication disorders to Americans stammer?” I exclaimed. from a private boarding school with ashare with hospital and school person- A smile broke across Kevin’s face. I relatively well-equipped computer labnel. And so it was, that on February 13, showed him the photographs of famous to a four-room secondary school withI met with Kevin in a large, sunny din- people who stutter: His teacher and dirt floors and no electricity. Part of mying hall, joined by his teacher, school pastor nodded in astonishment. I ex- mission was to discuss stuttering withprincipal, pastor, and the volunteer. plained what we know about stammer- the headmasters and leave resource ma- As I sat down with Kevin, I asked ing—that people who stutter seem to be terials donated by The Stutteringhis teacher to interpret the letter Kevin born with a neurophysiological predis- Foundation. It was not surprising thathad written before my arrival: “Thank position to stutter, and that stuttering almost everyone knew someone whoyou very much for informing me that I seems to be genetically transmitted in stuttered, and, without exception, theycan be healed with my speaking. Yours many cases. We discussed how many had the misconception that nothingsincerely, Kevin O.” thousands of messages travel from the could be done to help. In each case, Kevin spoke in English and Swahili brain to our muscles to allow us to teachers and administrators were eagerduring our time together and stuttered breathe and move for speech. I ex- to learn, and welcomed the informationin both languages. Kevin referred to the plained that somehow, as some people provided by the Stuttering Foundation.disorder as “kigugumiri” or “stammer- go from an idea to shaping sound into Through e-mail, Kevin’s teacher anding.” He explained that he had been speech, they sometimes stammer. I continue to work together to helpstammering since he was about four Kevin. Kevin happily agreed to reportyears old. He had no idea what caused “Almost everyone knew back to me about how he is doing. Hehis stammering, although he did recall someone who stuttered, and, is eager to correspond with a 14-year-that one of his uncles also stammered. without exception, they had old American boy who stutters.When I asked him if he had found any- the misconception that noth- As we moved toward the end of ourthing to do that makes it easier to talk, ing could be done to help.” time together, it was a joy to hear Kevinhe replied, “Not yet.” I asked how he chuckle before he used fluency shapinggot his ideas across when he had diffi- Kevin had hoped that I would be and stuttering modification techniquesculty talking. He responded, “Go slow.” curing him of this “problem.” I ex- on one of the few Swahili phrases I“Good idea!” I replied. plained that I would not cure him, but know: “Hakuna matata!”* As Kevin and I talked, often with the would show him how he could learn toassistance of his interpreter, I learned make speaking easier. We practiced Barbara Mathers-Schmidt, Ph.D., is athat when he stutters, he doesn’t know “easy speech” techniques. I then professor in the Communicationsexactly where or how the sound stops, showed him the Self-Therapy for the Sciences and Disorders Department atbut he is aware of working hard and Stutterer book, and reviewed the stut- Washington Western University,then getting tired. He also shared that tering modification techniques, so that Bellingham, WA.people occasionally make fun of him, Kevin and his teachers would be well *Don’t worry, no problem! □
SUMMER 2004 1-800-992-9392 5 “Mr. 59” and Ken Venturi Score with Palm Desert Golf Benefit for SFA Play a few tournament is to raise money for sever- rounds, soak al of Al’s favorite charities. This year, up the sun in the Stuttering Foundation is one.” Palm Desert, Foote, a competitive amateur golfer and sip cham- who has played in the tourney for the pagne with past 15 years, also stutters so had golf legends much in common with Venturi. Ken Venturi “It’s really through Ken Venturi and Al that we’re making a contribution to Geiberger— the Stuttering Foundation. I had lunch and donate with Ken and Terry Cole [tournament to charity at organizer] and he discussed his expe- SFA poster with Ken the same time? riences as a teenager with stuttering, Venturi promoting The annual and how he worked through it and stuttering awareness. “Mr. 59” Golf then became a CBS commentator.”Empowered Speech Invitational The invitational brings together 130Continued from page 2 hits a hole in one with this plan! players over three days, playing twogest Joy as a commencement speaker? Thanks to the efforts of Bob Foote courses in what has long been a mecca “I didn’t, the president recommend- and Ken Venturi, the Stuttering for golf afficionados.ed her,” Bloom responds. “He [Dr. R. Foundation was one of three chari- And after the play, there is play!Mark Sullivan] said, ‘How do you ties which benefitted from Al Clinics and demonstrations. Athink Joy would be. Do you think she Geiberger’s 20th Annual glittering banquet with singers,could do it?’ I said, ‘I’m sure she Invitational at the Desert Falls entertainers, and comedians. Acould!’ When it was over, all 2000 Country Club on April 23-24. silent and live auction. Roastspeople stood and gave her a standing Ken Venturi, past chairman of and toasts.ovation. It was so moving and she did National Stuttering Awareness Week, “It’s an all-around wonderful threeit so well.” was this year’s honoree at the tourna- days of golf,” Foote Contact Sister Charleen Bloom at ment, hosted by Geiberger. agreed.518-454-5122 or Dr. Donna “On June 10, 1977, Al Geiberger It’s also an all-Coooperman at 518-458-5357. The shot a score of 59 in the Danny around wonderfulSt. Rose program is open to children, Thomas golf tournament,” said Bob way to help thoseteens, adults, parents and siblings. Foote, assistant tournament organizer who stutter.SLPs are welcome to observe. and longtime friend. “The score of 59 The Stuttering For information about other pro- was the lowest competitve round by Foundation thanksgrams, go to www.stutteringhelp.org any pro golfer ever. It was a remark- all participants.and click on Resources, then able achievement. So, some friends of (Final results andReferrals. Programs are listed by state Al’s started this tournament to cele- pictures in the next The cover of 1964and/or country. □ brate that sensational score. Part of the newsletter.) Sports Illustrated.Swish Scores With Kids Who Stutter in New DVD Continued from page 1who stutter. The students at Purdue, all by hand. The next step is to model Who can resist?for whom this is a senior project, have him using a 3-D program like MAYA,” “Not kids who stutter, if our researchthoroughly researched the “human ap- says Ali. “Because he’s a basketball, is right,” said Michelle, an interactiveplication”—what works for kids in we create him in a series of spheres. multimedia development major whosegrades 2-6 as far as memory retention, Texturing is the process of taking the computer coding skills, combined withcharacters they relate to, attention material the character would be made animation, bring Swish to life.span, ad infinitum. of and slapping it on him—skin like a “I’m primarily here to work in the The background research had to be basketball, eyeballs. It’s the texturing human research subjects,” Michellerigorously defended to a board of pro- that gives personality.” added. “We have to test this on chil-fessors before Swish got past the The result of this wizardry is Swish, dren to see if they like Swish and seesketchbook stage, according to Ali, a a bouncy, genderless, cartoon with a if it works. That’s ultimately what wesenior from Bahrain who dreams of kid’s voice and vocabulary, who pops want—for it to be effective.”becoming “the Steven Spielberg of the in and out of the video, asking ques- To ensure that Swish is, he’ll beMiddle East.” tions such as, “Does stuttering ever field tested with children in the speech “To create Swish, the first step is bug you?” that are answered by chil- clinics at Purdue and Florida Stateconcept art, drawings and storyboards dren who stutter. University. Continued on page 12
6 www.stutteringhelp.org 1-800-992-9392Actor’s Ongoing Support for Stuttering To donate electronically go to the SFA’s Give Page online at www.stut- teringhelp.org. Or give by phone and credit card by calling 1-800-992- Once again, Nicholas Brendon 9392.fans are reaching out to wish Nick a By mail, you may send a check to:happy birthday and to help the SFA! The Stuttering Foundation, 3100 Stanford Dean Piazzo and Gina Perez-Baron. Nick’s birthday is April 12, but Walnut Grove Road Suite 603, P.O.you can still contribute afer that date Box 11749, Memphis, TN 38111- Stuttering Doesn’t Stop Meand be part of the Nick Brendon 0749. I am a third year medical studentBirthday Project 2004. More impor- Please indicate that your gift is as- at Stanford University School oftanly, you can still directly help those sociated with the Nick Brendon Medicine. I don’t know how much Iwho stutter, and wish the actor a Birthday Project. □ would say I’ve “overcome” stutter-happy birthday at the same time. ing, but it no longer stops me from Nick has a lot going on right now, pursuing the life I want.with a new made-for-TV movie, I stuttered terribly as a child. I’dCeleste in the City, that aired in try to hide it or sit in silent frustra-March on ABC family, and other pro- tion as someone else stood up andjects. (Check it all out at his Web site, claimed my words. As a teenager,www.NickBrendon.com.) Still, he’s my speech improved but I still hatedalways been right there for others it and, at times, hated myself for it.who stutter through his support of I was in my twenties when some-and outreach for the SFA. thing shifted. Sick and tired of stut- Since 2001, Nick has served as a tering and feeling sorry for myself, Ispokesman for the Stuttering saw an ad about a “cure” for stutter-Foundation of America. In that time, ers. Great! Then I found the cost,visitors to his Web site have con- $2,500. I had to find another way.tributed more than $5,000 to The So, I started trying to accept myStuttering Foundation. stuttering. Accept. Now, there’s a Helping the SFA has been a very word that really stuck in my throat!significant outcome of Nick’s role on But what else was there? Slowly, IBuffy the Vampire Slayer. Here’s our tried hiding it less. I tried announc-chance to acknowledge all he’s done! ing, “I stutter” when the struggle got too great. I stopped avoiding tele-Updates Reflect New Gains in Knowledge phone calls. I started speaking up. Sometimes my speech wasBook for Pediatricians make life better. Book 0021, a 72-page smoother. Sometimes people no- book, is available for $2.00 by catalog or ticed it less. I still stutter, but I’m not A new edition by Barry Guitar, Ph.D.,the University of Vermont, and informa- online. Elmer Fudd. People tell me it takestion reflecting the latest neurological and a while for them to even notice.genetic research introduces the subject Risk Factors Chart I’ve taught myself a few strate- If You Think Risk Factor What to True for gies that help. Public speaking re-of stuttering in the new third edition of look for my childthe child who stutters: a guide for pedi- Brochure Family history of stuttering A family member who still stutters mains the worst. But today, it’s justatricians. Book 0023, which includes a If You Think Your Age at onset Time since After 3 1/2 Stuttering 6-12 my unique “thing.” And I see that first noticed months oruseful chart to help determine the need Child is Stuttering is stuttering longer Speech errors, Other speech- trouble following everyone’s got their own “uniquefor early intervention, is available from packed with infor- language delays directions thing”—something to struggle with,the SFA for $2.00 or may be download- mation to help parents understand the to overcome.ed for free. difference between normal disfluency These days, stuttering doesn’t and stuttering. With the addition of a risk hold me back so much; I’m not so F O U R T H E D I T I O N factors chart and a “How to Help Right afraid. And fear was, and remains,For Teens do you stutte r: Away” section, the brochure is even my biggest obstacle. Getting past Teenage years a guide for tee ns more useful for parents trying to to help that, I’m able to do the things I needcan be tough, espe- their child immediately, while determin- to so I can be what I want to be.cially for someone ing the need for professional interven- Gina Perez-Baron is a student atwho stutters. Do tion. “Seven Tips for Talking” offer ex- Stanford University School ofYou Stutter: A cellent advice on speaking to any child. Medicine. Her poem is at newsletterGuide for Teens THE STUTTERING FOUNDATION Brochure 41 may be downloaded free; at www.stutteringhelp.org □ $8.00 for 100 copies. □ PUBLICATIOoffers real help to N NO. 0021
SUMMER 2004 1-800-992-9392 7 News Shorts Invest in Kids Selects SFA Web Site as a “Five Star” Resource for ParentsDonny Sethl works on a song with “Our experts at Invest in Kids have SA Scholarship Benefitsmusical director Everett Bradley. “If I selected your web site, www.stutter- PWS Down Underdon’t talk, they take a part of me,” inghelp.org as an important resource The International Stutteringsays the Greenwich, NY teen. of parents of children under five!” Association in Perth, Australia emailed wrote Chris Geady to tell us about its thanks for all those who contributedActing Out for NSAW their “Five Star Recommendation” of to their scholarship fund, and sent aContinued from page 3 SFA’s site. Invest in Kids is a non- photo of everyone from outsideyoung people who stutter. And of profit organization which helps fami- Australia who was able to attend theircourse, we need to raise a little bit of lies make the most of their children’s gathering. “I am sure that your contribu-money.” first five years: “The years before five tion will not be forgotten in a lot of Taro’s experience as a person last the rest of their lives.” □ places around the world,” writes Stefanwho stutters, combined with the Hoffman of the ISA. “Thanks again. □transformative power of theatre, NSSLHA Chapters Donatecompelled him to create Our Time.A successful actor himself—now in Thanks to the University of North Genetics Gain Groundthe cast of the off-Broadway pro- Kansas and Nicholls State University Continued from page 1duction of STOMP—Taro’s goal is chapters of the National Student Speech-Language Hearing Associa- While his recent study involvedto help others who stutter find a safe more than 50 families from acrossplace to express their creativity, to tion, which recently sent gifts to the SFA. Nicholls State is in Thibodaux, North America, Drayna is pursuingfind their voice in performing. additional studies elsewhere in the Members study acting, singing, LA, and UNK is in Kearney, NE. □ world. A previous article in the SFAplaywriting, drumming and dance newsletter documented one familywith professional artists. No perfor- under study in Cameroon, Westmance experience is required and Africa, and recent efforts have takenthere are no fees to join, hence, in Drayna to Pakistan, where the highpart, the reason for the benefit. number of cousin marriages present “Our Time provides an environ- particularly favorable conditions forment free from ridicule where genetic studies of stuttering.young people who stutter discover Drayna cautions people not to ex-the joy of creating and performing pect quick cures from this research.original theatre,” notes gala host “Our goal is to use genetic studies toJane Alexander, Emmy-award win- understand at least some of the under-ning actress of film, stage and tele- New Album, “RightFully lying causes of stuttering. While notvision. Alexander first won acclaim Spoken” for PWS all stuttering is genetic in nature, wefor her Tony-winning role in The look forward to unraveling this part ofGreat White Hope with actor James Frankie Jones has released a new CD, the puzzle of stuttering, which willEarl Jones, who also stutters. “RightFully Spoken,” for those who hopefully lead to better treatments in “Our Time provides a powerful stutter. “I am a PWS and have dedicated the future,” he notes. □way for the audience—families, my music and life to uplifting and moti-friends, professionals—to begin to vating those who stutter,” writes the Lincoln, NE, musician. A popular per- Upcoming Workshopsfeel and understand the challenge of former in public schools, Frankie’s sin- Two-Day Workshopthose living with stuttering,” said Stuttering Therapy: Practical IdeasLee Caggiano, executive director of gle, “Man in the Mirror” is well-known in the stuttering community. For infor- for the School ClinicianFriends: The Association of Young June 11-12, 2004 in Cincinnati, OHPeople Who Stutter. “Taro Alex- mation, call the SFA at 1-800-992-9392.ander has given voice to stories that The Stuttering Foundation of America is Two-Week Workshopmight otherwise have gone untold.” a tax-exempt organization under section Stuttering Therapy: Workshop for Specialists 501(c)(3) of the Internal Revenue Code June 2005 in Iowa City For more information call or and is classified as a private operatingemail Our Time at 212-414-9696 or foundation as defined in section All Five-Day Workshops are firstname.lastname@example.org or 4942(j)(3). Charitable contributions and bequests to the Foundation are tax- Applications may be downloaded fromSFA at email@example.com. □ deductible, subject to limitations under the Code. www.stutteringhelp.org or call 1-800-992-9392
8 www.stutteringhelp.org 1-800-992-9392Letters: Reader Response to Survey on Electronic DevicesDear SFA: and effectiveness of electronic auditory Dear SFA, If the SpeechEasy is being marketed as feedback devices. While the article in- I commend your survey about elec-a cure, that is wrong, but as a tool, I find cluded quotes from satisfied users, includ- tronic anti-stuttering devices. However,it very helpful. I spoke today at lunch to a ing those who had used their device suc- the survey showed that persons who stut-large group of advertisers. It helped me to cessfully for more than a year, the overall ter have misconceptions about the de-control my gentle onsets more effectively gist was that electronic auditory feedback vices.and I had fewer blocks than usual. I real- devices are in fact not a “magic bullet.” The most common reason cited for notize those in search of the magic pill will As the president and CEO of one of the buying a device was “expense/lack of in-be disappointed, but as a tool, it is im- leading providers of such devices, it may surance.” Since 1992, Casa Futuramensely valuable to me. come as some surprise that I agree with Technologies has helped every American I complained of its price, also, but I’m this conclusion… electronic devices are consumer who has needed our devices, re-comfortable the company has invested not a “cure” for stuttering. Instead, they gardless of his or her ability to pay.much in its research beyond the manufac- offer a technologically advanced treat- Survey results included a complaint aboutturing cost of the device. ment option that can help people who stut- a “$700-800" fee and “90% money-back My clinician, Helen Duhon of ter speak more fluently with less effort. As guarantee” apparently charged by anotherFranklin, Tenn., thought long and hard such, it is important that anyone consider- company. Casa Futura has always offeredbefore she began handling the device. She ing such a device be able to separate fact a 60-day, 100% money-back guarantee.is a Vanderbilt speech therapy grad who is from fiction. Respondents “cited concerns over lacktrying to interest them in further study of A key to clearing up misconceptions of long-term research on devices.” Thethe device. about these devices is to understand where International Journal of Language and You are wise to warn against the de- they fit on the continuum of available Communication Disorders (2003, Vol. 38,vice as a “cure,” but as a tool I think it has treatment options. Stories in the news No. 2, 119-129) recently published a long-much to offer. The SFA performs a valu- media tend to provide an oversimplified term study of our least expensive devices.able service and there are scams out there view, proclaiming AAF devices as “mira- Researchers tested nine severe adult stut-to be wary off. I don’t think the cle cures.” As speech fluency profession- terers before using the devices, and againSpeechEasy device is one of them—but it als, we must do a better job communicat- three months later. The subjects used thecertainly is not a cure. ing the benefits and limitations of AAF devices about thirty minutes per day. The Vince Vawter, IN devices. To this end, new and upcoming subjects’ stuttering diminished 50%, Editor, Evansville Courier & Press □ research data published in peer-reviewed without any other speech therapy. scientific journals provides some valuable One respondent complained about hisHi SFA, insight. device being difficult to use in noisy envi- I am a school based SLP, employed by A study published last year in the ronments. Hearing safety is a paramountan intermediate school district. We have International Journal of Language concern. Users who experience ringing inhad many parents of children who stutter Communication Disorders (Vol. 38) test- their ears or headaches should discontinueinterested in auditory feedback devices. ed the efficacy of the device called using their device and get their hearingOur assistive technology department has SpeechEasy, which was referenced in checked. It’s also possible that overuse ofdecided to purchase a Fluency Master for SFA’s previous newsletter article. The an anti-stuttering device could cause aa student through Michigan State study subjected seven users to a variety of child’s auditory processing to develop ab-University. tests, and reported that the device reduced normally. To minimize hearing impair- I have a great interest in stuttering and stuttering significantly while helping to ment, anti-stuttering devices have a vari-have agreed to analyze and provide data produce speech that was more natural. ety of noise-reduction features.for the ISD to determine the effectiveness While the study provides many valu- The last comment was telling. A moth-of these devices. Personally, I do not think able answers, it also raises some ques- er wrote, “I’m most disappointed. Itit is wise for schools to purchase these de- tions. Foremost among these is the long- wasn’t a quick fix. Since it wasn’t, [myvice, as they may be unleashing some- term efficacy of such devices, given that son] quit using it.” That isn’t the device’sthing they cannot control. They are cost- the study subjects were followed for just fault! Successful stuttering treatment re-ly devices that have little empirical evi- four months after being fitted. quires hard work over a long time. Thedence that support their efficaciousness. What the already reported data shows devices can be of great value when used I am reviewing and analyzing videos is that when used in conjunction with con- as part of a larger stuttering therapy pro-of the students before the Fluency Master, ventional therapy, the SpeechEasy AAF gram. Anyone looking for a “quick fix” isat the introduction of the Fluency Master, device enhances the rate of progress likely to be disappointed.and 2-3 months after initial use. among patients, and is a valuable new tool Thomas David Kehoe Alisa MacDonald, M.S., CF-SLP for SLPs to consider in concert with other Owner, Casa Futura Technologies □ Battle Creek, MI □ therapeutic options. Editor’s Note: The Stuttering Foundation of Darwin Richards America welcomes your response; however,Dear SFA: CEO, Janus Development Group due to space constraints, we reserve the right The Winter 2004 edition of SFA’s (SpeechEasy) □ to edit articles for length. Address your lettersnewsletter reported the results of a survey to firstname.lastname@example.org or The Stutteringthat appeared largely critical of the appeal Foundation, 3100 Walnut Grove Road, Suite 603, Memphis, TN 38111.
SUMMER 2004 1-800-992-9392 9Seminars Attract Hundreds to Learn About Stuttering Packed rooms, enthusiastic partici- cluding If Your Child Stutters: A Guidepants and engaging speakers have gath- for Parents, The School-age Child Whoered around the country to learn about Stutters: Working Effectively withstuttering. SFA has been there to help, Attitudes and Emotions, Integration ofincluding, at press time, a Contemporary Therapies,trip to San Antonio for the Sometimes I Just Stutter, andTexas Speech-Language magnets,” Hatcher said.Hearing Association confer- SLP June Haerle-ence. Campbell and her husband, In Long Beach, CA, Allen, represented the SFASFA’s Deborah Squires and at the California Speech-SLP Liz Brown manned a Language Hearing Associa-busy table at the L.A. tion annual conference in The fluency game’s in the bag for Garrett andUnited School’s conference March in Long Beach. Robert in SLP Mary Turcotte’s group on Familyon stuttering. The event Workbooks and magnets Day at Tacoma’s two-day event, March 5-6.drew nearly 600 speech-lan- were hot items, disappearing The SFA was invited to have a table ofguage pathologists. quickly from the booth, publications at both. About 700 SLPs—a which also drew people sim- On April 3, Charley Healey,record number—attended Vivian Sisskin, of the ply to thank the SFA for pro- University of Nebraska, spoke at thethe annual conference spon- University of Maryland, viding such affordable mate- Oklahoma state gathering in Edmonds.sored by the The University spoke March 5 on rials. SLP Darla Benoit vol- “Problem Solving inof Memphis chapter of Stuttering Therapy,” at- March 5 -6, unteered to man a tableNHSSLA, with guest speak- tended by about 350 SLPs the Tacoma of SFA publications.er Bill Murhpy, Purdue from Washington state. Public School “It was fun workingUniversity. SFA staffers District and at the SFA table andLaura Beauchamp and Lorissa Hatcher the Tacoma/South Puget hearing all the positivehosted a booth in SFA’s hometown in Sound chapter of the comments about theMarch. NSA sponsored a work- Foundation,” Benoit “We sold out of lots of things and had shop for therapists, fol- SLPs Doug Wing and Connie said. “I’m so proud andto run back to the office for more, in- lowed by a Family Day. Haines of Tacoma, WA. grateful to be involved with it.” Lisa Scott Trautman, Florida State Annual Audit of Foundation by KPMG University, spoke in St. Louis, spon- The annual audit of The Stuttering ministration and general expenses and sored by Friends. Lisa talked about the Foundation financial reports for 2003 the 6/10 of 1% for fund raising are very CALMS model, answering questions was recently completed by the ac- low, and since we are fortunate to have and personalizing the talk to meet ther- counting firm of KPMG. Following is an endowment which more than covers apist’s needs, reported SLP Susan a recap of funds and expenditures for our overhead expenses, donors can be Short. Lee Caggiano spoke to parents the year. assured that their gifts will go directly on Stuttering 101, and Lee, Irene The 4.0% of expenditures for ad- to support our program services. Bullard and Susan facilitated parent roundtable discussions. Funds expended for: Barry Guitar, University of Creation, production, printing and distribution Vermont, distributed SFA material of educational materials . . . . . . . . . . . . . . . . . . $556,589 . . . . . 49.8% when he spoke in Norfolk, VA, at a Public information and education . . . . . . . . . . . . $236,261 . . . . . 21.1% conference organized by Kim Stallings, Educational symposia for professionals and former SFA Workshopper. □ research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . $176,695 . . . . . 15.8% Maintain Web site and toll-free stuttering Give the United Way information hotline . . . . . . . . . . . . . . . . . . . . . . $ 96,902 . . . . . . 8.7% Total for Program Services: . . . . . . . . . . . . $1,066,446 . . . . 95.4% You can donate to the Stuttering Foundation directly Other expenditures: through the United Way. Direct Administration and general . . . . . . . . . . . . . . . . . $45,000 . . . . . . 4.0% designation allows you to Fund raising expense . . . . . . . . . . . . . . . . . . . . . . $6,934 . . . . . . . .6% specify your gift to the SFA. Total Expenditures: . . . . . . . . . . . . . . . . . . . $1,118,386 . . . .100.0% Proof of nonprofit status can The Stuttering Foundation of America is a private operating foundation which be sent to your employer by expends its funds on its own programs and does not make grants to other institutions. fax, mail or email.
12 www.stutteringhelp.org 1-800-992-9392 ■ The Stuttering Foundation two-dayNEWSBRIEFS communication or public speaking skills, their address is: Toastmasters International, Inc., Swish Scores conference for speech-language Continued from page 5 pathologists working with school-age Attention: Membership Department, P.O. Box children who stutter, Practical Ideas 9052, Mission Viejo, CA 92690, Telephone: The team has finished lighting the for the School Clinician, will be held (714) 858-8255; Fax: (714) 858-1207. scenes for shadow and depth and heads June 10 and 11, 2004, in Cincinnati. ■ For those wanting to obtain a copy of Self- into a week of intensive animation. For an application form, contact the Therapy for the Stutterer in Japanese, write to Stuttering Foundation at 1-800-992- Rich is the lead animator, so it’s his Dr. Shokichi Nakajima, 2-21-1 Ogawa 9392 or download it directly at Machida-shi, Tokyo 194, Japan, turn to shine, lip-syncing Ali’s com- www.stutteringhelp.org. telephone/fax: 0427 (96) 5092. puter-altered voice, making sure eye- ■ The Stuttering Foundation Western ■ Self-Therapy for the Stutterer is available in brows move, adding the hundreds of Workshop, Diagnosis and Treatment French. Write to the Association des Begues touches that make up the gigabytes’ of Children who Stutter: Practical du Canada, 2596 A rue Chapleau, Montreal, Strategies, directed by Susan Quebec, Canada, H2K 3H6; 1-877-353-1042. worth of memory that is Swish. Hamilton, M.A., Jennifer Watson, Please enclose $20.00 Canadian to cover “We have 14 scenes between [live] Ph.D., with David Prins, Ph.D., will be printing, postage, and handling costs. footage segments,” noted Helen, so held at the University of Washington, ■ For those wanting to obtain a copy of the pace back and forth is quick. Seattle, June 23 - 27, 2004. Stuttering and Your Child: Questions and Then it’s to the desktop equivalent ■ The Stuttering Foundation Southern Answers in Hindi, write to: Dr. Sajiv Adlakha,Workshop, Diagnosis and Treatment of Adlakha Speech and Hearing Clinic, A67 of a film cutting room floor for editing.Children Who Stutter: Practical Strategies, Dayanand Colony, Lajpat Nagar - 4, New “The final thing is called render-directed by Lisa Scott Trautman, Ph.D., Dehli-110024, India, or e-mail: ing, and you take the animation thatKristin Chmela, M.A., and Joe Donaher, email@example.com Those interested inM.A., will be held at Florida State University, joining a fluency and public speaking skills we have and convert it into a movieJune 23 - 27, 2004. group should also contact Dr. Adlakha at the block, and then the editing and com-■ The Stuttering Foundation two-week above address. posing comes last,” Ali said.Workshop for Specialists will be held at the Books on Stuttering or Related Here, Swish finally gets to meetUniversity of Iowa, Iowa City, Iowa, in June, Topics Available from Bookstores: his live friends, who together, have2005, directed by Patricia Zebrowski, Ph.D.and Toni Cilek, M.A. For more information, ■ Understanding Stuttering, Nathan Lavid, made this video by kids, about kids,contact the Stuttering Foundation at 1-800- M.D. Available by calling 800-737-7788. for kids who stutter. □992-9392, or write Dr. Zebrowski, c/o SFA, University Press of Mississippi, Jackson, MS;3100 Walnut Grove Road, Suite 603, www.upress.state.ms.us. 2003.Memphis, TN 38111-0749. This unique work- ■ Beyond the Last Village and Jaguar: One Man’s Struggle to Establish the World’s Firstshop brings together speech-language pathol-ogists from all over the world. Jaquar Preserve by Alan Rabinowitz. NW Workshopper’s■ Clinical Training in Lidcombe Program: A Available from Island Press, Washington, D.C.; www.islandpress.org. Death Leaves LossBehavioral Intervention in Stuttering for ■ Stuttering Therapy: Rationale and One of the all-time favoriteYoung Children. This workshop featuring Procedures by Hugo H. Gregory, June H. workshoppers, Andre Courcy,Elisabeth Harrison will be held June 16-18, Campbell, Diane G. Hill, and Carolyn B.2004, at the University of Vermont. For more died on March 15, 2004, of pan- Gregory. Available from Allyn and Bacon,information, please contact Rosalee Shenker Boston, MA; www.ablongman.com. 2003. creatic cancer. Services were heldat the Montreal Fluency Centre, ■ Les begaiements: Histoire, psyhologie, eval- in Quebec on March firstname.lastname@example.org. uation, varietes, traitements by Anne Van Hout A member of the SFA’s■ FRIENDS, The National Association and Francoise Estienne. Published by Masson,of Young People Who Stutter, will hold S.A.,120 boulevard Saint Germain, 75280 Paris Northwestern University Work-their annual convention in the San Cedex 06, France. shop Class of 1997, Andre wasFrancisco Bay area from July 22-24, ■ Forty Years After Therapy: One Man’s remembered with fondness by2004, at the Marriott Hotel at the San Story, by George Helliesen, M.A. Available workshoppers.Mateo/San Francisco Airport. Please con- from Apollo Press, Inc., 1-800-683-9713 or on-tact FRIENDS2004SF@aol.com or 1- line at www.apollopress.com. “I laughed so hard with him888-866-8335 for information. A regis- ■ Programmed Stuttering Therapy for that I would have tears rollingtration brochure can be downloaded from Children and Adults, (2001) by Bruce Ryan, down my eyes. I am sure his fam-the website www.friendswhostutter.org. Ph.D. Available through publisher Charles C.. Thomas or on-line at www.amazon.com. ily and friends will miss him ter-■ To participate in a study on client sat-isfaction with stuttering therapy, please ■ Making a Difference for America’s ribly,” said Susan Hamilton, SLP. Children: SLPs in the Public Schools, by Donations in memory of Andrecontact Walter Manning, Ph.D., at wman- Barbara Moore-Brown and Judy Montgomery.email@example.com. Available from Thinking Publications, Eau will fund a scholarship to the■ For those wanting to purchase a poster Claire, WI. 715-832-2488. Workshop for Specialists. □entitled The Bill of Rights and ■ Ben Has Something To Say by Laurie Lears,Responsibilities of PWS, contact Michael illustrations by Karen Ritz. A book for childrenSugarman at MSugarman1@aol.com. It ages 5-9. Albert Whitman & Co., Mortonrepresents the combined effort of the IFA Grove, IL. 800-255-7675.and ISA. ■ Sharing the Journey: Lessons from my■ LISTSERV for doctoral students specializ- Students and Clients with Tangled Tongues by STUTTERING FOUNDATION TMing in stuttering. The intent of this list is to Lon Emerick, Ph.D., available from Northserve as an open forum for doctoral students. Country Publishing, 355 Heidtman Road,Membership is limited to doctoral students Skandia, MI 49855 for $13.95 plus $2.00 A Nonprofit Organizationonly. To subscribe, send the following mes- postage and handling. Call toll-free 1-866- Since 1947 — Helping Those Who Stuttersage to firstname.lastname@example.org: sub- 942-7898, or visit www.northcountrypublish- 3100 Walnut Grove Road, Suite 603scribe stutterdoc firstname lastname" or con- ing.com. P.O. Box 11749 ● Memphis, TN 38111-0749tact Joe Donaher at email@example.com. ■ Living With Stuttering by Kenneth St. Louis, Ph.D. Available from Populore Publishing 1-800-992-9392 ● 1-800-967-7700■ For those interested in joining Toastmasters Company, P.O. Box 4382, Morgantown, WV www.stutteringhelp.orgInternational as a way to improve fluency, 26504, 304-599-3830. □ firstname.lastname@example.org