1. www.stutteringhelp.org • 1-800-992-9392 • www.tartamudez.org
T HE S TUTTERING F OUNDATION
A Nonprofit Organization SUMMER 2006 Since 1947... Helping Those Who Stutter
20/20’s Stossel leads campaign
TM
Google Grant
awarded to SFA Stuttering Awareness Week May 8-14
The Stuttering Foundation’s Web
site, www.stutteringhelp.org,
has received more than five
million hits since it was re-
designed last fall. And those
J ohn Stossel, co-anchor of
20/20, is one of the most
recognized and articulate
reporters today. However, he
once considered giving up his
numbers are sure to increase broadcasting career because
thanks to Google Grants.
TM
of his stuttering.
The online search engine se- Stossel didn't quit, and this
lected the Foundation to receive year he joins the Stuttering
free Web ads that Foundation in recognizing
The SFA appear when an Stuttering Awareness Week,
Web site Internet user May 8 - 14, and celebrating
had searches for specif- the Foundation’s 59th year
1,606,472 ic key words relat- of helping those who stutter.
ed to stuttering. “Fear of stuttering can
hits in The ads link the easily become worse than
March Web user to the the stuttering itself,” ob-
alone. Foundation’s site. served Stossel. “The idea
In announcing that I’m on television
the grant, Google wrote, “After
TM
and making speeches is
careful review of all the appli- still a shock to me
cations we received, we chose sometimes.”
your group based on the During Stuttering
strength of your application. Awareness Week, the
We’re excited to be able to help John Stossel’s
Emmy Award-winning re-
you reach your target audience new book will porter and SFA will work
with public service messages.” be released to educate Americans
during Stuttering about this little under-
The Stuttering Foundation Awareness Week
was chosen because of its stood speech disorder
“strong mission to help the Continued on page 4
world in the area of education and
global public health.”
Since it was launched in 1997, Did You Know? many males as females.
the Web site has been an essential National Stuttering Awareness Week was People who stutter are as intelligent and
tool in helping the Foundation ful- passed by a Joint Resolution of Congress well-adjusted as non-stutterers.
in May 1988. People who stutter often have excellent
fill its mission of providing re- Over three million Americans stutter. communication skills. John Stossel is a great
sources and educating the public Stuttering affects three to four times as example.
about stuttering. ❑
Index PSAs hit the airwaves nationwide
Tiger Woods speaks Stuttering Awareness Week started Mary J. Atkins, promotions, PSA
out on stuttering . . . . . . . . . . . . 3 early this year when radio sta- and community calendar coor-
Genetics studies in Pakistan . . . 5
tions around the country began HELP FOR STUTTERING
Radio Public
dinator with Clear Channel
running 15- and 30-second Service Announcements
radio stations in Bozeman,
Public service ads hit a home run 5 public service announcements Mont., said, “Your press kit
1-800-992-9392
Genetics of stuttering . . . . . . . . 2 narrated by John Stossel. looked so good! I have al-
Survey on stuttering in The PSAs were distributed
THE
STUTTERING
FOUNDATION ready sent them to produc-
the workplace . . . . . . . . . . . . . . 6 to 2,618 radio stations across tion to be added into our rota-
State conventions are hot . . . . . 7 the country in time for Stuttering tion,” she said.
Kids respond. . . . . . . . . . . . . . . 8 Awareness Week, which begins You can hear the the radio PSA at
May 8. www.stutteringhelp.org. ❑

2. 2 www.stutteringhelp.org 1-800-992-9392
Genetics of stuttering: New developments
By Ehud Yairi, Ph.D. ing are brighten. The Illinois group
University of Illinois later concluded that a mixed model,
For a long period, information on incorporating SML, polygenic com-
the familiality of stuttering was pri- ponents (many other genes), as well
marily based on data concerning the as environmental factors, had the best
percent of people who stutter having fit (Ambrose, et al. 1997).
relatives with his- Furthermore, they showed that not
tories of stutter- only does the initial expression of
ing. This figure
has varied from stuttering have strong genetic compo-
20% to 74%. nents but also its future developmen-
Charles and Katy Van Riper on their wedding day.
Although it is ap- tal course. That is, children who stut-
parent that stutter-
ing runs in fami-
ter and have a familial history of
chronic stuttering would tend to fol-
Speech pioneer
lies, this fact, in-
and-by itself, is in-
low that same pattern. And vice versa,
children who stutter but have a famil-
remembered
Ehud Yairi, Ph.D. Catherine Jane Hull Van Riper is
sufficient to con- ial history of naturally recovered stut- her full name, but most remember
clude genetic un- tering, would tend to follow that pat- her simply as Katy.
derlining. After all, a good number of tern. Another significant contribution Jane Fraser, president of the
tendencies, e.g., religious and politi- was made by twin studies that consis- Stuttering Foundation spoke about
cal affiliations, also run in families. tently demonstrated considerably her on Nov. 20 during a forum on
As research methods improved, higher concordance levels of stutter- early pioneers in the field of speech
family pedigrees (trees) were ana- ing in identical than in non-identical at the ASHA convention in San
lyzed in detail to study the occurrence Diego, Calif.
of stuttering in different classes of rel- twin pairs (e.g., Howie, 1981;
Felsenfeld, et al., 2000). While many know Katy’s husband,
atives: mothers, fathers, sisters, and the late Dr. Charles Van Riper, was a
brothers, taking into account family The accumulated findings justified a
move from behavioral and statistical pioneer in the field of stuttering, less
size, something that was overlooked is known publicly about Katy, who
in the past. Obviously, a family of 12 genetics into biological genetics.
Typically, the first phase in such re- was also a pioneer in her own right.
with one member who stutters pre- “She was the first woman to gradu-
sents a very different picture than a search is linkage analysis aimed at
identifying the general location of pos- ate in the field of speech pathology at
family of 4 with one who stutters. the University of Iowa,” Fraser said.
Using sophisticated computer pro- sible genes using DNA extracted from
samples of body tissues. Then, forms While Katy was the valedictorian
grams (e.g., segregation analysis), in- of her high school class and graduat-
vestigators evaluated the transmission of known marker genes are identified
on every chromosome (or just chro- ed from the University of Iowa, she
of stuttering by matching the disor- was turned down for a job on her first
der’s familial distribution against sev- mosomes of interest). When a marker
gene form is co-inherited with stutter- interview. “You are too young,” she
eral possible genetic was told.
models. They were suc- ing (linkage), the indica-
tion is that the gene con- She later found work at a new
cessful in showing that a tributing to stuttering is speech clinic started by Bryng
few alternative models on the same chromo- Bryngelson at the University of
provided a good fit. some as the marker Minnesota.
Professor Kenneth Kidd gene; in fact, very close “To be on faculty of a major uni-
of Yale University and to it. versity with only a B.A. degree was
his team made an enor- At the beginning of unheard of at the time. Especially for
mous contribution in this the current millennium, a woman,” wrote her husband in a bi-
respect, e.g., Kidd, et al. Nancy Cox (2000) reported the results ography years later.
(1978) and Cox, et al. (1984). (For a of the first complete standard Katy taught many of Dr.
more comprehensive review, see genome-wide screen of DNA markers Bryngelson’s classes, helped him
Yairi, et al., 1996). for analysis of stuttering for members with his research, and edited his pro-
Approximately 13 years ago, of the Hutterite population in North fessional articles.
Ambrose, et al. (1993) at the Dakota. In this ground-breaking “It was the perfect job for me,
University of Illinois were the first to study, areas in chromosomes 1, 3, 5, 9, with new challenges every day,”
report statistically significant evi- 13, and 15 had evidence for linkage of she later wrote. Her salary was
dence for a Mendelian single major stuttering. Since then, four additional $1,200 a year.
locus model (SML) which assumes promising genome-wide linkage stud- Katy died in 1984 after a long
that there is one, or several major ies have identified several chromoso- battle with cancer.
genes responsible for stuttering. mal regions that appear to be associat- “Many of you will remember her
Viswanath et al., also supported this ed with stuttering. Shugart et al. for the warmth and caring she gave to
finding. If correct, then chances for (2004) reported a modest signal for a all whom she touched” her husband
identifying genes underlying stutter- Continued on page 6 wrote after her passing. ❑

3. SUMMER 2006 1-800-992-9392 3
100 years young! Tiger wins at golf
After 100 years, Edward
Rondthaler has his routine down. He
— and stuttering
writes a weekly column for his local Top-ranked golfer Tiger Woods
newspaper, walks each morning, does tells CBS’s 60 Minutes that it takes
his own errands, and regularly helps hard work and a competitive spirit
others — including the Stuttering to overcome childhood stuttering.
Foundation. In fact, other than the “The words got lost, you know,
Foundation’s founder Malcolm somewhere between the brain and
Fraser, Rondthaler was the first major the mouth. And it
contributor to the organization. At 100 years old, Edward Rondthaler contin-
was very difficult,
Staying busy keeps Rondthaler in ues to support causes important to him such
but I fought
great shape. as the Stuttering Foundation. through it. I went to
“Being 100 feels like being a year a school to try and
older than 99,” he says. “200 is pretty magazine. Clearly, speech correction get over that, and I
old, but 100 is not.” has at last risen above quackery, and just would work
On Nov. 23, 1981, Rondthaler in- I’m sure that your foundation has my tail off,” Woods
cluded a $1,000 contribution with a had much to do with that...” told the news pro- Woods
letter he wrote to the then Speech Rondthaler says he gives to the gram in April.
Foundation of America. SFA because “it completely “The parallels between speech
His letter said, “It is with this changed my life for the good.” performance and sports perfor-
enormous pleasure that I send you In fact, he says he’s always rec- mance are striking,” said Jane
this check for a thousand dollars. ommending that others who stutter Fraser, president of the Stuttering
Two weeks ago I received your contact the SFA. Foundation, “and Tiger Woods is
book Self-Therapy for the Stutterer “I have recommended it to so the latest example of how the many
and have read it with amazement. many people. I’m so happy to sup- hours of practice and hard work to
Every word in it rings true. And I port it in any way I can,” win in sports are no different from
speak from a lifetime of experience Rondthaler says. “I even give out those long hours spent in therapy
... Today at 76, the severity is much, copies of Malcolm’s book.” for stuttering.”
much less, and for half of my life In 1970, Rondthaler co-founded NBA Hall of Famer and sports
stammering has been more of an in- the International Typeface commentator Bill Walton dealt with
convenience than a handicap. What Corporation — an international stuttering just like he did basketball.
excites me is that at least someone leader in typeface design and mar- “I thought about the fundamentals
has gotten to the root of the trouble keting. ITC collaborates with of the game and how to start with
and can write about it in an under- world-class designers to provide a the basics like the ability to me-
standing, lucid way.” library of over 1,650 classic type- chanically duplicate moves on a
He continues, “When I was a boy, faces and innovative new designs. basketball court. And then I just ap-
there were many young stammerers. In 1975, he was awarded the TDC plied that to speaking.”
There seem to be fewer now, and for Medal, the award from the Type Chicago Bulls’ legend Bob Love
a long time I had been wondering Directors Club presented to those notes that “countless hours of work
why. It’s been a long time since I’ve “who have made significant contri- taught me to manage moments of
seen the little ads that Bogue and butions to the life, art, and craft of difficult speech.”
others used to have in almost every typography.” ❑ In a recent interview, Denver
Nuggets’ star Kenyon Martin said
of his stuttering, “How I got
Annual Audit of Foundation through it was just by working hard
The annual audit of the Stuttering Foundation fi- The 3.8% of expenditures for administration and
nancial reports for 2005 was recently completed by general expenses and the 6/10 of 1% for fund raising
at it.”
the accounting firm of Cannon and Company, are very low, and since we are fortunate to have an en- U.S. Open golf champion Ken
Certified Public Accountants, Memphis, Tenn. dowment which more than covers our overhead ex- Venturi adds, “I have had to work
Following is a recap of funds and expenditures for penses, donors can be assured that their gifts will go
the year. directly to support our program services. through the years to overcome stut-
Funds expended for: tering and to speak more easily and
Creation, production, printing and distribution fluently.” Venturi compares moving
of educational materials . . . . . . . . . . . . . . .. . . . . . . . . $554,564 . . . . .46.3% smoothly through speech to moving
Public information and education . . . . . . . . . . . . . . . . . . . . . . . . 312,247 . . . . . 26.1% gracefully through a golf stroke.
Educational symposia for professionals and research . . . . . . . . .201,355 . . . . . 16.8% “Tiger Woods is the perfect role
Maintain Web site and toll-free stuttering information hotline. . . . . 76,086 . . . . . . 6.4%
Total for Program Services: . . . . . . . . . . . . . . . . . . . . . . . . .$1,144,251 . . . . .95.6% model for all school-age children
Other expenditures: who struggle with this complex
Administration and general . . . . . . . . . . . . . . . . . . . . . . . . 45,524 . . . . . . 3.8% disorder,” said Fraser. The
Fund-raising expense . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7,627 . . . . . . 0.6% Foundation offers free resources at
Total Expenditures: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . $1,197,402 . . . . . .100% www.stutteringhelp.org where
The Stuttering Foundation of America is a private operating foundation which expends its funds on its own
programs and does not make grants to other institutions.
Tiger joins a long list of celebrities
who stutter. ❑

4. 4 www.stutteringhelp.org 1-800-992-9392
Stossel Continued from front page my newly found fluency.”
Stossel is aware of the need for
that affects more than three million continued practice. “Immediately
people in the United States. after going through intensive treat-
Stossel has also chosen Stuttering ment, I remember having the attitude
Aw a r e n e s s that I’d never
Week to release have a stutter-
his newest book ing problem
Myths, Lies and again, and then
Downright the crushing
Stupidity: Get disappointment
Out the Shovel when I did,” he
— Why notes. “I had to June Campbell answers questions at the SFA
Everything You booth in March during the National Association of
constantly re- Pediatric Nurse Practitioner’s Annual Conference
Know Is Wrong. mind myself to in Washington, D.C.
Stossel’s keep practic-
childhood and
the early part
ing.”
adults
Many
who
Pediatric nurses
of his career
were fraught
stutter must re-
member to on the front line
with the diffi- practice speech Pediatric nurse practitioners are fre-
culties of stut- therapy tech- quently the first medical professionals
tering. “I re- niques in order with whom parents interact regarding
member terror John on the set at 20/20. to stay on top the well-being of their children.
in the class- of their fluency. These dedicated professionals
room,” Stossel said. “In “We are thrilled to proved they are perfect resources to
my early days as a re- have as our support parents with questions about
porter, I did regular spokesperson some- stuttering as illustrated by their inter-
live 30-second seg- one who has brought actions with June and Allen
ments with the anchor important issues and Campbell at the National Association
of the news program; I news-breaking topics of Pediatric Nurse Practitioner’s
woke up every morn- to the nation’s atten- Annual Conference in Washington,
ing in fear of that. D.C. in late March.
The fear stayed with tion through his Nurse practitioners from around
me all day long.” broadcast voice,” said the country flocked to the Stuttering
He considered quit- Jane Fraser, president Foundation Exhibit Booth to obtain
ting but, fortunately, of the Stuttering literature, ask questions and discuss
sought speech therapy Foundation. “Mr. specific cases.
first. “Once I began Stossel did not let stut- A frequent topic of discussion
to see the results of tering silence his story, was educating parents regarding
treatment, I was like and we hope that how to best interact with disfluent
a cork out of a bot- through his success and preschoolers.
tle,” he said. “I started John Stossel’s new book will
hard work, others will Nurses were thrilled to learn
talking all the time, be released during Stuttering find encouragement to about the expanded Web site and
celebrating and testing Awareness Week. deal with theirs.” ❑ DVD formatted films as well as
available pamphlets and books in
English and Spanish.
The nurse practitioners represent-
ed diverse work settings including
Wedding gifts that help children private practices, clinics, schools,
and a variety of hospital depart-
Some supporters are helping the the charity of their choice. ments including acute care, oncolo-
Foundation by saying “I do.” Fortunately, the Stuttering Foundation gy, neurology, and extended care. ❑
Thanks to the I Do Foundation, figures among those lucky enough to
the SFA has re- be chosen.
ceived donations The organiza-
from brides and tion also partners The Stuttering Foundation of America is a tax-exempt
grooms across the with stores and organization under section 501(c)(3) of the Internal
honeymoon des- Revenue Code and is classified as a private operating
country. foundation as defined in section 4942(j)(3). Charitable
The SFA uses these funds for its tinations that contribute a portion contributions and bequests to the Foundation are tax-
many projects, including helping to charity. deductible, subject to limitations under the Code.
children who stutter. To participate or for more informa- THE
The I Do Foundation allows cou- tion, contact SFA at 1-800-992-9392 STUTTERING
ples to request that guests donate to or visit www.stutteringhelp.org. ❑ FOUNDATION

5. SUMMER 2006 1-800-992-9392 5
New light on genetic factors
By Dennis Drayna, Ph.D. Drayna, a leader of the NIH
PSAs hit
NIDCD
Studies in Pakistan over the past
study. “While we have not yet
identified this gene on chromo-
a home run
few years have some 12, we know where to look, The Stuttering Foundation’s pub-
added new impetus and we’re optimistic that we’ll lic service ads (PSAs) are scoring
to research on ge- see rapid progress in the coming big this year thanks
netic factors in stut- year,” said Dr. Drayna. to the many national
tering. Research at The work was carried out at the publications that
the National National Institute on Deafness provide space.
Institutes of Health and Other Communication For the first time,
has recently identi- Disorders, in collaboration with ESPN ran PSAs and it
fied a specific loca- scientists at the University of was a double play!
tion for a gene that Chicago and the Centre of The magazine ran two
Dennis Drayna, Ph.D.
seems to be an im- Excellence in Molecular Biology ads in the April 10th
portant contributor at the University of the Punjab, in edition. One was a Full-page PSA
to stuttering in this population. Lahore, Pakistan. full-page PSA and the used by ESPN.
Scientists have found that this gene re- Finding a gene alteration that other was an ad featuring NBA All
sides on chromosome 12, which pro- causes stuttering is of great inter- Star and Hall of Famer Bill Walton.
vides a start to identifying the gene it- est, as it may help shed light on the The Foundation makes several ver-
self. These results were recently pub- underlying causes involved. Of sions of PSAs available
lished in the American Journal of particular interest will be what the to magazines and
Human Genetics, a leading scientific gene codes for, and how it acts, newspapers.
journal. both in stutterers and in normally Among those fea-
Like elsewhere in the world, fluent individuals. tured in PSAs are
stuttering in Pakistan appears to “Even finding one gene is un- 20/20 co-anchor
come from both genetic and non- likely to be the whole story.” cau- John Stossel, con-
genetic causes. Although stutter- tioned Dr. Drayna, who empha- servationist Alan
ing does not seem to occur at a sized that it’s likely there will be Rabinowitz,
higher rate in the Pakistani popu- other genes, as well as non-genet- Winston Churchill,
lation overall, it often occurs in ic factors involved in stuttering. Buffy the Vampire
large family clusters. This may be “But we’d be delighted to have Slayer star Nick
due to traditional marriage pat- one gene to study to get us started Brendon, legendary
terns that have existed in Pakistan on understanding the bigger pic- basketball star Bob
for many generations, in which ture.” he said. Love, Annie Glenn,
marriage between cousins is con- Reference: and country music
sidered highly desirable. Riaz, N., Steinberg S., Ahmad, J., star Mel Tillis. The
“We are fortunate to have won- Pluzhnikov, A., Raizuddin, S., Cox, N., and
Nick Brendon ad is
derful cooperation from the many D. Drayna. Genomewide significant linkage
to stuttering on chromosome 12. American also produced in
Pakistani families involved in Journal of Human Genetics. 76:647-651 Spanish.
this study.” said Dr. Dennis (2005) ❑ In addition to
ESPN magazine,
PSAs so far this
year have appeared
Early stuttering treatment crucial in Time, Forbes,
Dr. Tricia Zebrowski of the Redbook, Seventeen,
University of Iowa was featured on Golf Digest,
TV stations around the country dis- Prevention, Town &
cussing the importance of early inter- Country, Porthole,
vention for children who stutter. Black Enterprise,
Since the segment first ran in House Beautiful,
December, many more stations have American Medical
aired the report, including the CBS News, JAMA,
station in Green Bay, Wis., the NBC Georgia Trend,
station in Omaha, Neb., and the ABC Parents, Penthouse,
station in Creve Coeur, Ill. stutters. Northshore, Alabama
The report tells viewers, “There’s Many stations airing the segment Living, and others — which have a
no miracle cure for stuttering. It’s include a link to the Foundation’s combined circulation of more than 12
best to evaluate a problem early.” Web site, www.stutteringhelp.org. million readers.
The segment features Zebrowski And some include a way for viewers Next time you pick up a magazine,
working with a 7-year-old boy who to e-mail the article to others. ❑ be on the lookout. ❑

6. 6 www.stutteringhelp.org 1-800-992-9392
Stuttering may make a difference at work
A newly released survey by The Foundation offers an updated
Professor Marshall Rice of the brochure, Stuttering: Answers for
Schulich School of Business at York Employers to help dispel these in-
University, Toronto, correct assumptions.
found 51 percent of re- The survey of 566 people who
spondents — all of stutter from 37 countries also
whom stutter — believe found 42 percent felt a job inter-
they would have a better view was “cut short.” Fourteen per-
job if they didn’t stutter. cent said an employer told them di-
Sixty-eight percent of rectly that they would not be hired
those surveyed agreed Rice for a position because of their stut-
with the statement: “I tering. Sixty-one percent agreed Frances Cook, Barry Guitar, Jane Fraser
believe my capabilities, at times, with the statement, “I feel I have to (front row), Carroll Guitar, Peter Ramig, Lisa
have been misjudged by my supervi- be ‘better’ than fluent speakers in Scott and Patricia Zebrowski are creating a
new DVD called Stuttering: A Demonstration
sors because of my stuttering.” order to have the same opportuni- of Basic Techniques and Clinical Skills.
“The results point to the need to ties for employment.”
Forty-four percent indicated they It will be a comprehensive first course in stut-
further educate employers about stut- tering therapy including fluency shaping and
tering,” Dr. Rice said. “Clearly, some were currently a member of a stutter- stuttering modification techniques. Starting
employers do not understand stutter- ing support group. Fifty-nine percent with the basics — how we talk, how we stutter
ing and make incorrect assumptions said they have been a member of a — clinicians will then be taught techniques,
about the abilities of their employees support group at one time. such as soft starts, changing rate, in block cor-
who stutter. This misunderstanding The largest number of responses rections or pull-outs, and more. The DVD will
results in reduced employment and came from the United States, Britain, be accompanied by a learner’s manual and will
be available for ASHA CEUs.
promotion opportunities.” Canada, Australia and India. ❑
Genetics Continued from page two on chromosome 7. The region on References
Ambrose, N.G., Yairi, E., & Cox, N. (1993).
Chromosome 12 is very close to that Genetic aspects of early childhood stuttering. Journal
stuttering locus on chromosome 18 reported signal by Riaze and col- of Speech and Hearing Research, 36, 701-706.
and Riaz et al. (2005), using Pakistani leagues for the Pakistani families.
Ambrose, N.G., Cox, N.J., & Yairi, E. (1997).
The genetic basis of persistence and
families, found a strong linkage signal Second, a region on chromosome 2 recovery in stuttering. Journal of Speech,
on chromosome 12. An NIH team showed a significant increased link- Language, and Hearing Research, 40, 567-580.
Cox, N., Kramer, P., & Kidd, K. (1984).
under the leadership of Dr. Drayna age signal for families who had high Segregation analyses of stuttering. Genetic
studied stuttering in a large Cameroon linkage signal chromosome 9 or neg- Epidemiology, 1, 245-253.
family and reported a modest evi- Cox, N. (2000). Genetics of stuttering: Insights
dence for linkage on chromosome 1 ative signal on chromosome 7. and recent advances. Presented at the annual na-
tional convention of the American Speech-
(Levis, et al., (2004). Incidentally, the region on chromo- Language-Hearing Association. Washington, D.C.
The largest and most recent study some 2 has been implicated in recent Felsenfeld, S., Kirk, K.M., Zhu, G., Statham, D.J.,
studies of autism. We have speculat- Neale, M.C. & Martin, N.G. (2000). A study of the ge-
on linkage mapping was conducted netic and environmental etiology of stuttering in a se-
by the Illinois International ed that such gene interactions may lected twin sample. Behavioral Genetics, 30, 359-366.
provide better insight into stuttering Howie, P. M. (1981). Concordance for stuttering
Genetics of Stuttering Project under in monozygotic and dizygotic twin pairs. Journal
the leadership of Professor Nancy sub-types. of Speech and Hearing Research, 24, 317-21.
Although it is too early to specu- Kidd, K.K., Kidd, J.R., & Records, M. (1978). The
Cox, University of Chicago, using possible causes of the sex ratio in stuttering and its im-
blood samples from families in the late on what genes might be in- plications. Journal of Fluency Disorders, 3, 13-23.
USA, Sweden, and Israel. Our team volved, it appears that the genes in Levis, B., Ricci, D., Lukong, J., & Drayna, D.
(2004). Genetic linkage studies in a large
identified moderate evidence for the different chromosomes are sim- West African kindred. American Journal of
linkage for the broad category of ilar, having some evolutionary ho- Human Genetics, 75, S2026.
mology. This might be consistent Riaz, N., Steinberg, S., Ahmad, J., Pluzhnikov,
“ever-stuttered” (including both A., Riazuddin, S., & Cox, N.J., et al.
with the possibility that related (2005). Genomewide significant linkage to stutter-
persistent and recovered stuttering) genes affect susceptibility to stut- ing on chromosome 12. American Journal of
on chromosome 9 whereas for per- tering. In summary, we have ad- Human Genetics, 76, 647-651.
sistent stuttering only it was on Shugart, Y.Y., Mundorff, J., Kilshaw, J., Doheny
vanced from simplistic casual ob- K., Doan, B., Wanyee, J., et al. (2004). Results of a
chromosome 15. The strongest sig- servations that stuttering runs in genome-wide linkage scan for stuttering. American
nal for males only appeared on families, arriving now at a point
Journal of Medical Genetics A, 124, 133-5.
Suresh, R., Roe, C., Pluzhnikov, A., Wittke-
chromosome 7 and for females only where we are within arm’s reach of Thompson, J., C-Y Ng, M., Cook, E., Lundstrom,
on chromosome 21. identifying the specific gene, or C., Garsten, M., Ezrati, R., Yairi, E., Ambrose, N., &
Cox, N. (2006). New Complexities in the Genetics
Also very interesting, further anal- genes, underlying stuttering. One of Stuttering: Significant Sex-specific Linkage
yses revealed two possible genetic has to keep in mind, however, that Signals. American Journal of Human Genetics.
Viswanath, N., Lee, H., & Chakraborty, R. (2004)
routs to stuttering. First, there was a appreciable portions of the avail- Evidence for a major gene influence on persistent de-
significant increase in the evidence able evidence have consistently as- velopmental stuttering. , 76, 401-12. Human Biology
Yairi, E., Ambrose, N. & Cox, N. (1996).
for linkage on chromosome 12 for signed significant roles to non- Genetics of stuttering: a critical review. Journal of
families who had high linkage signal shared environmental factors. Speech and Hearing Research, 39, 771-84. ❑

7. SUMMER 2006 1-800-992-9392 7
Carol Ecke shows a new workbook to CSHA Jennifer Watson, Carol Ecke and Russ Hicks
President Tricia Chambers during the smile about the great materials during the Tricia Krauss-Lehrman, Carol Ecke and
California convention. 2006 Texas convention! Sheila Patterson in Texas.
• Great Falls
•cross Am
Bellingham
AA eri Atlantic
•• •ca •
City
F Rosemont
Indy
S
• • •
San Francisco
Kansas City Columbus
Louisville
Kristin Chmela and Mary Mantilla
••Fullerton
San Diego • Myrtle Beach
The Stuttering Foundation booth
was the first booth you saw as you
give helpful tips in Illinois.
Carol Ecke makes an
•
• •
Grapevine
New Orleans
Austin
walked in the door in Texas 2006.
impact wherever she goes
Nationwide tour is
If you’ve been to a state conven- not had the opportunity to actually look
tion recently, chances are you’ve through the materials and see the
probably visited the Stuttering DVDs. They are totally thrilled when
Foundation’s booth and consulted they examine the materials,” Ecke says.
with Carol Ecke, a Board Recognized “I also view my role as a teaching
Tom Chmela keeps things Specialist in Fluency Disorders. opportunity for each individual I TCU students’ smiles bring
moving! Ecke travels from coast to coast to meet,” Ecke explains. SLPs to the booth.
work the SFA booth several times “Carol is our eyes and ears in the
each year — reaching more than field,” says Jane Fraser, president of
27,500 people. the Foundation. “Ideas for new books,
Ecke, a speech-language patholo- videos, brochures and other products
gist herself, is able to answer ques- often come from the feedback we re-
tions, suggest specific publications, ceive at these conventions.”
and offer advice. Recently, she has been in San Diego,
After each convention, she pro- Fullerton and San Francisco, Calif.;
vides feedback about products and Rosemont, Ill.; Bellingham, Wash.;
comments from attendees. These Great Falls, Mont.; Atlantic City, N.J.;
suggestions are then used to update New Orleans, La.; Indianapolis, Ind.;
materials and inspire new directions. Kansas City, Kan.; Louisville, Ky.; Volunteer SLP Lonnie
Judy Martin and Carol “I really enjoy traveling to the states Myrtle Beach, S.C.; Columbus, Ohio; Harris helps out in
Ecke greet SLPs in Myrtle and meeting the therapists who have and Austin and Grapevine, Texas. ❑ Louisville.
Beach.
Judy Martin got to meet some of her on-
line students at the SFA booth. This table in Ohio is set for SLPs. Carol Ecke tries a new angle in Louisville!

8. 8 www.stutteringhelp.org 1-800-992-9392
Dear SFA: Reader Response
Send letters to SFA, P.O. Box 11749, Memphis, TN 38111-0749 or email info@stutteringhelp.org.
Teachers check out DVD No one is perfect “slow down.” I usually stutter when
Dear SFA: Hello: I’m excited, interrupted, or trying to
Thank you for sending our school I am 11 years old. My stuttering say something fast. I usually talk fast.
the free DVD and handbook about needs just a little bit of improve- Some kids laugh at my stuttering and
stuttering in response to our request. ment. I am fine with my stuttering. my sister thinks my stuttering is cute.
Our teachers are already checking I understand that I’m not perfect By my stuttering teacher says it’s OK
them out of the library to learn how and no one else is either. to stutter, and it’s part of me and now
to help their individual students Prince, 11 I’m used to it.
more effectively. Boston Paul
Sue Cusey New York City
Library Technician Films such as
Breeze Hill Elementary School Stuttering and Seeking help from others
Vista, Calif. Your Child: Dear SFA:
Help for In your summer 2005 newsletter, I
Speech is getting easier Parents are read the letter that was sent in by a 15-
Dear SFA: now available year-old in Atlanta. I was touched by
I’m a 7-year-old who stutters. I free as his letter and could really understand
streaming where he was coming from. I am 21
enjoy video games, swimming and video online
acting. Sometimes stuttering bothers years old and have been stuttering my
at www.stutteringhelp.org.
me and sometimes it doesn’t. When entire life. It’s been an uphill battle,
it bothers me, I get mad and walk but it was nice knowing that I wasn’t
out of the room to catch a breath. I the only person in the world facing
see a speech therapist who helps me Nurses send thanks this challenge, even when in my hard-
talk easier. I like working with her. Dear SFA: est moments I felt alone. I wish I had
Thanks for reading my story. The New York State Association of thought to go to your Web site sooner.
Noah, 7 School Nurses would like to thank High school and college have been
Charleston, S.C. you for your literature, brochures, another challenge. I live in a rural
and samples your organization gen- area, and many of my professors had-
Overcoming teasing erously donated for the New York n’t encountered someone with a
Hello: State School Nurse Orientation. speech impediment and would ask me
My name is James and this is my This information was given to new what I would like to do when the time
story. When I was about 7 years old, school nurses throughout the state. came for me to give an oral presenta-
I got picked on about my stuttering. Thank you again in helping school tion. I was torn between receiving spe-
Sometimes I used to cry when I got nurses add to their resource infor- cial treatment and participating like
picked on. Then when I was 9, I mation to share with students, staff the rest of the my class. I taught my-
started to get over people picking and parents. self different ways to work around my
on me. Then when I was 10, which Barbara Weingart, RN, NCSN speech, but I’d always wished there
is now, I am a master at ignoring Westfield Central School was a way for people who stutter to
people who make fun of me. Westfield, N.Y. share their experiences and help each
James,10 other out. So that’s why I decided to
Kannapolis, N.C. Speaking can be hard write. Maybe there could be come
Hi: kind of way for everyone to commu-
‘I wish people understood’ I’m Nick. Usually people just want nicate and share their experience,
Dear SFA: to know if stuttering is hard for me. whether it’s on what to do when
My name is Martina and I’m 12 Some people even tease me about it. someone teases you, talking on the
years old. A lot of people in my I hate it when people tease me. phone, or how to give an oral presen-
class tease me about my stuttering. When I’m mad about stuttering, I tation or what to do on a job interview.
When I ask someone a question, I go up to my room and talk to my I know that you may already have re-
get very nervous before I ask them stuffed animals. sources for this, but I felt it was some-
because I’m afraid I’m going to Nick thing that could help others.
stutter. A cashier looked at me like I New York City Kathleen
was crazy. I wish it would just go E-mail
away, and I wish people understood Stuttering is ‘part of me’
my problem. When people make Hi: Editor’s note: The SFA provides
fun of me, I just cry. I’m Paul. I don’t like stuttering be- many resources, including the
Martina, 12 cause whenever I stutter, people tease brochures Using the Telephone: A
New York City me by saying, “da, da, da, da” or Continued on page 9

9. SUMMER 2006 1-800-992-9392 9
Letters Continued from page 8 Book is just what the doctor ordered
Guide for Those Who Stutter, The Child Who Stutters: To the Pediatrician with my report in the
Stuttering: Answers for Employers, Pediatrician is reaching new audi- hope that I will educate their pediatri-
which address interviewing, and Notes ences worldwide. cian about early childhood stuttering.”
to the Teacher, which discusses teasing This 16-page publica- She continues, “I really do believe
and speaking in class. These brochures tion is new in its 3rd the publication and feedback from
are available to download for free at edition, updated recent- parents have changed the practices
www.stutteringhelp.org or order by ly by Dr. Barry Guitar. of many pediatricians regarding
calling 1-800-992-9392. Adriana DiGrande, a early childhood disfluency.”
speech-language pathol- The book also includes a convenient
ogist in the Boston area, DiGrande referral checklist and can be ordered
shares, “Whenever I by calling 1-800-992-9392. Or down-
write up an evaluation on a preschool- load it at www.stutteringhelp.org. Just
er, I always send along a copy of The click on the “Pediatricians/Physicians”
Child Who Stutters: To The tab on the left. ❑
Celebrity Corner
Cuban author frequently
Send us more!
Hi:
I work for the Thief River Falls
wrote about stuttering
I n June 1998, the English-speaking the onset of the Castro regime only to
Public Library in Thief River Falls, find himself a target of attacks by gov-
Minn. I received one of your DVDs world was introduced for the first
time to Cuban writer Calvert ernment agents. Another quirky story is
titled, Stuttering: For Kids, By Kids. The Execution in which a man is sen-
I would like to get three more copies Casey, who had died in 1969 at the
age of 45. Well known in the world of tenced to death for a crime he did not
for other branches. commit and never refutes the charges.
Heidi Latin American litera-
ture, 1998 marked the Casey was in exile during the last
Thief River Falls, Minn. part of the Batista regime, where he
first time that his com-
plete works were trans- lived in New York and wrote maga-
Student from Afghanistan lated into English and zine articles. Returning to Cuba when
Hello: Fidel Castro took power, he was
My name is Fahima and I am a girl published in one volume
entitled Calvert Casey: prominent among the intelligentsia
from Afghanistan. I live in California The Collected Stories.
Casey
surrounding Castro and wrote for
and I am 11 years old. I have prob- Upon its publication, the following several government publications.
lems with speech. I don’t like my was written in Publishers Weekly: However, he became totally disen-
stuttering because it makes me feel “This volume is a fine overdue intro- chanted with the political situation in
embarrassed. I go to a speech thera- duction to one of Communist Cuba’s Cuba and went into exile in Rome,
pist. It’s fun to go to speech because most sophisticated writers.” where he wrote his famous novella
maybe it will help me talk better, and Calvert Casey was born in “Notes of a Simulator”.
I play games with my speech thera- Baltimore in 1924 to an Irish- In 1969, struggling with personal
pist. My teacher noticed my stuttering American father and a Cuban moth- issues as well as his severe stuttering,
in class when I stuttered on the letter er, moving to Cuba as a small child. Casey took his own life; on his desk
“T”. I always stutter on letters like His childhood was described by a he left open a Henry James book
“T,” “S,” and “D.” I mostly sutter at friend as being “isolated from other with an underlined passage which
home because I don’t control it. children because of his violent stutter.” read: “He was a man too fragile to
Anyway, my family is used to my Other accounts attest that the sever- live in this world.”
stuttering. I can control my stuttering ity of his stuttering continued into While Calvert Casey only wrote
only when I take a deep breath before adulthood. Friends and critics alike one novella and sixteen short stories
I start to talk, and maybe there are credit his stuttering for his developing in his career, he is well known in
some other ways I can control it. I characters in his writing that are up- Latin American literary circles; iron-
hate my stuttering. I am not the only rooted, disenchanted and alienated. ically, he remains ignored by the
one who stutters in my family. My In the New York Times book re- Cuban literary establishment.
brother (17) and my sister (16) stutter view, James Polk wrote, “Casey He frequently mentioned stuttering
too. Their stuttering is even worse writes from the shadows with cer- in his writing as he struggled with it
than mine because they don’t know tainty and fluent assurance of one every day of his life.
how to control it. Sometimes my stut- who knows them well.” With the publication of his works
tering gets so bad I can’t control it. I His most famous short story is The in English it is hopeful his writing
feel very embarrassed at that time. Homecoming, which is about a person will receive the same recognition in
Fahima who severely stuttered who enthusiasti- the English-speaking world that it
El Cajon, CA ❑ cally returns to his beloved Cuba during has received in Latin America. ❑

10. 12 www.stutteringhelp.org 1-800-992-9392
NEWSBRIEFS The Stuttering Foundation two-day con-
ference for speech-language pathologists
Books on Stuttering or Related
Topics Available from Bookstores:
lustrations by Karen Ritz. A book for children ages
5-9. Albert Whitman & Co., Morton Grove, IL. 800-
255-7675.
working with school-age children who stut-
ter, Practical Ideas for the School Clinician, Sharing the Journey: Lessons from my Students
Stuttering: An Integrated and Clients with Tangled Tongues by Lon Emerick,
will be held on June 9 and 10, 2006, in the
Approach to Its Nature and Ph.D., available from North Country Publishing,
Chicago area. For an application form, call
Treatment, Third Edition by Barry 355 Heidtman Road, Skandia, MI 49885, for $13.95
the Stuttering Foundation at 1-800-992-9392 plus $2 postage and handling, call toll-free 1-866-
or check www.stutteringhelp.org. Guitar. 2006. Available from
Lippincott, Williams & Wilkins, 942-7898; or from the Stuttering Foundation at 800-
The Stuttering Foundation Five Day 992-9392.
800-638-3030, www.LWW.com
Workshop, Diagnosis and Treatment of Living With Stuttering by Kenneth St. Louis,
Stuttering Recovery Personal
Children who Stutter: Practical Strategies, and Empirical Perspectives by Ph.D. Available from Populore Publishing
will be held at Children's Hospital of Dale F. Williams. 2006. Company, P.O. Box 4382, Morgantown, WV
Philadelphia June 21-25, 2006. Workshop Available from Lawrence Erlbaum 26504, 304-599-3830.
leaders are Joseph Donaher, M.A., Lisa Associates, Mahwah, NJ, www.erlbaum.com Stuttering: Its Nature, Diagnosis, and Treatment
Scott, Ph.D., and Kristin Chmela, M.A. Speech Therapy for the Severe Older by Edward G. Conture, Ph.D., published by Allyn &
Adolescent and Adult Stutterer: A Program for Bacon, Needham Heights, MA. (781) 433-8410.
The Stuttering Foundation two-week
Change by George Helliesen. 2006. Available Successful Stuttering Management Program,
Workshop for Specialists will be held at the
from Apollo Press, Newport News, VA, 800-683- Second Edition, by Dorvan Breitenfeldt, Ph.D., pub-
University of Iowa, Iowa City, Iowa, during lished by EWU Press, Cheney, WA, (509) 235-6453.
June and July, 2007, directed by Patricia Zebrowski, 9713, www.apollopress.com.
The Child and Adolescent Stuttering Treatment Synergistic Stuttering Therapy: A Holistic
Ph.D. and Toni Cilek, M.A. Guest speakers to be an- Approach by Sister Charleen Bloom and Donna K.
and Activity Resource Guide by Peter Ramig and
nounced. This unique workshop brings together Cooperman. Published by Butterworth Heineman,
Darrell Dodge. 2005. Available from Thomson
speech-language pathologists from all over the world. Delmar Learning, Clifton Park, NY. Woburn, MA.
The 9th Annual Convention of Friends will be Early Childhood Stuttering: For Clinicians by Stuttering Intervention: A Collaborative Journey to
held July 20-23, 2006, in Philadelphia, PA, at the Clinicians by Ehud Yairi and Nicoline Grinager Fluency Freedom by David Allen Shapiro, published
Embassy Suites Philadelphia Airport Hotel. For in- Ambrose. 2005. Available from ProEd, Austin, by Pro-Ed, Austin, Texas.
formation and registration, visit www.friendswhos- TX and amazon.com. Tongue Wars by William H. Perkins, Ph.D.,
tutter.org or call 866-866-8335. Begaiement: Intervention preventive precoce Athens Press, Los Angeles, CA, 800-551-2959.
chez le jeune enfant by Anne Marie Simon et al. Clinical Decision Making in Fluency Disorders
The International Fluency Association will hold the
2005. Available from the Association Parole by Walter H. Manning, Ph.D., published by
5th World Congress on Fleuncy Disorder in Dublin,
Begaiement, www.begaiement.org Singular/Thomson Learning.
Ireland, July 25-28, 2006. Trinity College is the set- Nature and Treatment of Stuttering: New
ting for this exciting international meeting. For more
Teach Me How To Say It Right, Helping Your
Child With Articulation Problems by Dorothy P. Directions by Richard F. Curlee, Ph.D. and Gerald
information, visit www.theifa.org. M. Siegel, Ph.D., published by Allyn and Bacon,
Dougherty, M.A. 2005. Published by New
The NSA Annual Convention will be held June 28- Harbinger's Publications, Oakland, CA. Available Needham Heights, MA.
July 2, 2006, in Long Beach, CA, at the Westin Long at www.newharbinger.com. Straight Talk on Stuttering, Information,
Beach Hotel. For more information and registration, Troy’s Amazing Universe, by S. Kennedy Tosten. Encouragement, and Counsel for Stutterers,
call 800-937-8888. 2002. Published by Brite Press. Order from Caregivers, and Speech-Language Clinicians, 2nd
For those wanting to purchase a poster entitled The www.TroysAmazingUniverse.com or amazon.com. edition by Lloyd M. Hulit, Ph.D. The publisher is
Bill of Rights and Responsibilities of PWS, contact A story about a seven year old who stutters. Charles C. Thomas, Springfield, Illinois.
The Strong Silent Type, by C. Kelly Robinson. Le begaiement, option guerison by Francois Le
Michael Sugarman at MSugarman1@aol.com. It rep-
A gripping novel about a young NFL star coming Huche, M.D., Albin Michel, Paris, France, 1998.
resents the combined effort of the IFA and ISA.
to grips with his stuttering. Available from New Order from Albin Michel, 22, rue Huyghens,
LISTSERV for doctoral students specializing in 75014 Paris. ❑
stuttering. The intent of this list is to serve as an open American Library, New York, and www.ama-
zon.com.
forum for doctoral students. Membership is limited to
Experiencias para compatir entre padres e hijos
doctoral students only. To subscribe, send the follow-
by Karina Couselo Rios, Maria Marta Gebara and
ing message to “listserv@listserv.temple.edu: sub-
scribe stutterdoc firstname lastname: or contact Joe
Mariela Ginhson.
equipfono_gcg@yahoo.com.
Order from donations
Donaher at turtlecraw@aol.com.
Our thanks to The Florida State
Stuttering Therapy: Rationale and Procedures
For those interested in joining Toastmasters by Hugo H. Gregory, June H. Campbell, Diane G. University and University
International as a way to improve fluency, communi- Hill, and Carolyn B. Gregory. Available from of Nebraska at Kearney
cation or public speaking skills, their address is: Allyn and Bacon, Boston, MA; www.ablong- chapters of the National
Toastmasters International, Inc., Attention: man.com. 2003. Student Speech-Language-
Membership Department, P.O. Box 9052, Mission Les begaiements: Histoire, psychologie, evalua-
tion, varietes, traitements by Anne Van Hout and
Hearing Association for
Viejo, CA 92690, Telephone: (714) 858-8255; Fax:
Francoise Estienne. Published by Masson, S.A., their recent gifts to SFA.
(714) 858-1207.
For those wanting to obtain a copy of Self-Therapy
120 boulevard Saint Germain, 75280 Paris Cedex These generous gifts help children
06, France. who stutter. ❑
for the Stutterer in Japanese, write to Dr. Shokichi Forty Years After Therapy: One Man’s Story by
Nakajima, 2-21-1 Ogawa Machida-shi, Tokyo 194, George Helliesen, M.A. Available from Apollo
Japan, telephone/fax: 0427 (96) 5092. Press, Inc., 1-800-683-9713 or THE
Self-Therapy for the Stutterer is available in French.
Write to the Association des Begues du Canada, 2596
www.apollopress.com.
Understanding Stuttering by Nathan Lavid. STUTTERING
A rue Chapleau, Montreal, Quebec, Canada, H2K 3H6;
1-877-353-1042. Please enclose $20.00 Canadian to
2003. University Press of Mississippi, Jackson,
MS. Order from bookstores or amazon.com.
FOUNDATION
Programmed Stuttering Therapy for Children A Nonprofit Organization
cover printing, postage, and handling costs. Since 1947 — Helping Those Who Stutter
For those wanting to obtain a copy of Stuttering and and Adults by Bruce Ryan, Ph.D. Available
through publisher Charles C. Thomas or online at
Your Child: Questions and Answers in Hindi, write to: 3100 Walnut Grove Road, Suite 603
www.amazon.com
Dr. Sajiv Adlakha, Adlakha Speech and Hearing Clinic, P.O. Box 11749 ● Memphis, TN 38111-0749
Making a Difference for America’s Children:
A67 Dayanand Colony, Lajpat Nagar - 4, New Dehli-
SLPs in the Public Schools by Barbara Moore-
110024, India, or e-mail: adlakhas@hotmail.com. Brown and Judy Montgomery. Available from 1-800-992-9392 ● 1-800-967-7700
Those interested in joining a fluency and public speak- Thinking Publications, Eau Claire, WI. 715-832- www.stutteringhelp.org www.tartamudez.org
ing skills group should also contact Dr. Adlakha at the 2488. info@stutteringhelp.org
above address. Ben Has Something To Say by Laurie Lears, il-