Do you want to become a member of the research and publication committee at IFA??

The Research and Publication Committee of IFA is inviting interested parties to join our team and work collaboratively towards implementing our recently revised goals (see latest draft below).

We strongly encourage junior researchers (e.g., PhD students and postdocs) to apply. They could significantly benefit from membership of an international committee and gain much by having a more top-down approach of research worldwide.

Before applying, please review our goals carefully and indicate those that you would like to be involved in or responsible for and on average how much time you can spend on committee work. 

Of course, any feedback on our goals and on how we can together improve the functioning of research and the research community is welcome.

Therefore, we invite interested parties to apply by sending an email to research_publication_committee@theifa.org. 


(p.s. you need to be or be willing to become a member of IFA to become a member of the committee)

IFA RESEARCH AND PUBLICATION COMMITTEE GOALS

Research-based

1)   Help to ensure a high quality research presence at IFA congresses

1. Liaise with organizers, program committee, and IFA conference committee.
2. Organize events and discussion rounds (on own activity).

2)  Encourage online exchanges on research

1. Organize an online discussion on a specific topic twice a year.
2. Provide a place to discuss the latest published research articles.

3)  Inform about research activities

1.  Maintain a list of all research-related contact persons at relevant associations.
2. Maintain a list of all research teams and published researchers.
3.   Collect opinions from researchers on last year’s most interesting research.

4)  Support researchers

1.   Interact informally and through surveys to identify and address needs.
2.  Manage research-related surveys with IFA membership.

Publication-based
1)  Collaborate with JFD to ensure quality and global reach

1. Interact with the Editor-in-Chief of JFD at the beginning and end of the academic year.
2.  Collaborate with JFD on recruiting and training a new generation of reviewers.
3. Initiate and maintain a mentorship program where senior researchers advise researchers from underrepresented or non-English speaking countries on different aspects of the research publication process.
4. d. Encourage researchers from underrepresented countries to publish in JFD.

2)   Support IFA committees to inform its members about activities worldwide

1. Deliver a newsletter twice a year (content TBD)

3)    Edit and support publication of the proceedings of the IFA congresses

Our brains are not abnormal but just different? A harmful attitude!

BSA posted a link to a research paper on their website here and added this sentence after a very short description of the research:

In 'research-speak' the authors are talking about 'abnormalities', though BSA holds that our brains aren't 'abnormal' but different.

Our brains are clearly abnormal, in the sense that they are different to the norm. They are not just different, because this typically means that they function well within the normal range and have aspects that are different but which do not impact functioning.

Therefore, BSA (or the person who posted it in the name of the whole BSA) does not represent my view as a person who stutters, and I am confident that many people that stutter and that I know would agree with me. Indeed, the BSA does also not represent the majority view of the stuttering community on this issue, in my view.

In fact, this attitude of telling researchers how to express themselves is making the researchers' life just more difficult and causing real harm as they have to spend valuable time thinking about words rather than about their research and are being forced to use words that do not accurately reflect their thinking just so as not to trigger some people who believe that stutteres are offended when, in my view, most don't care at all and would love to hear the unfiltered words of researchers.

Moreover, this attitude harms people who stutter as it prevents them to face the realities of their brains and creates hostility against researchers as the "bad" people who describe people who stutter in a "wrong and discriminatory way". Quite the opposite is the reality. Researchers care about people who stutter but they also care for their freedom to express themselves as they see fit.

European Clinical Specialization Course on Fluency Disorders

The European Clinical Specialization Course on Fluency Disorders is a one-year program - compatible with the workload of an SLT - for speech-language therapists wanting to become European Fluency Specialists. It consists of 25 credits (ECTS). Graduates of this course will distinguish themselves by their outstanding ability, in-depth knowledge and expertise in the field of fluency disorders. The program provides specialist knowledge and skills, that can be recognized by your local professional body as important criteria leading to clinical specialization.

The program is run by a consortium consisting of 16 partners (universities, colleges, specialized centers) from 9 European countries and will start its tenth course cycle in September 2017.

We would like to inform you that registration for the 1718-course cycle and pre-registration for the 1819-course cycle are open. (For the 1718-cycle only a few places are still available) 

The application procedure can be found here.

The ECSF consortium

Firing of veteran NIH scientist prompts protests over publication ban

A very sad story. A senior researchers got fired because he did not adhere to the very strict and often completely uselees but politically correct procedures. Result: the valid experimental data (on stuttering!) cannot be used in a scientific publication and the junior researchers face professional disaster under the "publish or perish" doctrine. Nan and Jerry asked for sanity for the sake of research.

Read here.

Latest review on genetics research

If you want to read the latest review on genetics and stuttering, you should read this Open Access article by Drayna and  Frigerio-Domingues.

Drayna is team leader at NIH for genetics of stuttering.

[Thanks to Ora for the tip]

How it looks like when you participate in a genetics study for stuttering

We do not need a witch hunt against those that mock our stuttering!

I am shocked to read that

A Starbucks barista has been suspended from their job after apparently ‘humiliating’ a man with a speech impediment by writing his name as ‘RRR…ichard’ on his order.

I certainly do not want that the person loses his job.

I suggest that that person and the person who got mocked meet and they talk through it.

But I also suggest that we stutterers should learn not to be offended by every little politically incorrect word or action that people who have no clue do. Change yourself and you will be Zen, and most importantly, you will have the strength to give the person useful feedback.

And I suggest that the BSA (British Stammering Association) should not become like an inquisition and change its tone to "many people are unaware of the issues faced by people who stutter but we are against punishing someone but in favour of them meeting up with people who stutter to understand their perspective."

Stammering and post-traumatic stress – some food for thought

Check out Paul's thoughtful article on Stammering and post-traumatic stress – some food for thought.

Nan's Fluency Bank

Check out the Fluency Bank!

FluencyBank is a shared database for the study of the development of fluency in both normal and disordered populations. Support comes from NIH Grant 1R01DC015494; P.I.s are Nan Bernstein-Ratner (University of Maryland) and Brian MacWhinney (Carnegie Mellon University) . Participants include normally-developing monolingual and bilingual children, children with disfluencies (CWD), adults with disfluencies (AWSD, and second language learners. Researchers and clinicians studying fluency who are interested in joining the consortium should read the Ground Rules and then request a username and password by sending email to nratner@umd.edu with contact information and affiliation.

Stuttering in advertising

Joe Gill writes to me:

Growing up with a stammer and studying to go into the Graphic Design industry I found that nearly all advertising aimed towards stammering was either very condescending or just outright bad design. I tried to tackle this with a design of a poster advertising campaign for 'The Starfish Project'.

What's your opinion? I really like the texts as they get to the heart of what it is like to be a person who stutters.

Here is an article on his work.

The new treatment approach: Stutter Pride

Here is what I recently read in a document need for damage control resulting from strong debates between various teams (fluency shapists, stuttering modifiers, and "stutter pride" proponents).

Until recently, we had two approaches: fluency shaping (learn how to speak in a new and more fluent way) and stuttering modification (learn how to modify your stuttering for the better).

Now, we have in analogy to Gay Pride, Stutter Pride. You say: it's OK that I stutter, actually it is not only OK, it's great because it makes me special and we should tell the world that we are proud to be stutterers. The approach is clear: define-away the problem. Just declare that there is no problem, or at the very least that this difference to the norm is no issue at all and it's society and the affected person brainwashed by society to set those norms. And in a second step, unleash political correctness on your enemies, because everyone who declares that fluent speech is the norm and that they do not like to listen to people who stutter, are stutter-phobes (in analogy to homophobes) is an enemy

Watch Area 44 and not Area 51!

Looks like a very interesting piece of brain imaging work by the Martin Sommer team with the main author Nicole Neef here:

Area 44 is a cytoarchitectonically distinct portion of Broca's region. Parallel and overlapping large-scale networks couple with this region thereby orchestrating heterogeneous language, cognitive and motor functions. In the context of stuttering, area 44 frequently comes into focus because structural and physiological irregularities affect developmental trajectories, stuttering severity, persistency, and etiology. A remarkable phenomenon accompanying stuttering is the preserved ability to sing. Speaking and singing are connatural behaviours recruiting largely overlapping brain networks including left and right area 44. Analysing which potential subregions of area 44 are malfunctioning in adults who stutter, and what effectively suppresses stuttering during singing, may provide a better understanding of the coordination and reorganization of large-scale brain networks dedicated to speaking and singing in general. We used fMRI to investigate functionally distinct subregions of area 44 during imagery of speaking and imaginary of humming a melody in 15 dextral males who stutter and 17 matched control participants. Our results are fourfold. First, stuttering was specifically linked to a reduced activation of left posterior-dorsal area 44, a subregion that is involved in speech production, including phonological word processing, pitch processing, working memory processes, sequencing, motor planning, pseudoword learning, and action inhibition. Second, left posterior-area-44-to-parietal functional coupling was deficient in stuttering. Third, despite the preserved ability to sing, males who stutter showed bilaterally a reduced activation of area 44 when imagine humming a melody, suggesting that this fluency-enhancing condition seems to bypass posterior-dorsal area 44 to achieve fluency. Fourth, time courses of the posterior subregions in area 44 showed delayed peak activations in the right hemisphere in both groups, possibly signaling the offset response. Because these offset response-related activations in the right hemisphere were comparably large in males who stutter, our data suggest a hyperactive mechanism to stop speech motor responses and thus possibly reflect a pathomechanism, which, until now, has been neglected. Overall, the current results confirmed a recently described co-activation based parcellation supporting the idea of functionally distinct subregions of left area 44.

Area 44 seems to be a kind of orchestra conductor, which goes somewhat into recent suggestions (and my belief) that stuttering is a system failure, i.e. that it's not necessarily a single function (in one area) breaking down but the system of different interacting areas as a whole but in this case it's one area that is needed to orchestrate the system. But I have to say that I do not know enough about this topic to make more informed comments.

RESTART DCM workshop in Rotterdam in July 14-16th

Marie-Christen Franken has written to me regarding a workshop she is organizing in Rotterdam:

This July we will have an International RESTART DCM workshop in Rotterdam, so far 14 clinicians from all over the world have subscribed for that. We could book about 6 or so more. Maybe you would like to bring this to the attention of colleagues who might be interested?

You can view the invitation here.

Walking, talking, and sharing in the French Pyrenees with Paul

If you enjoy walking in wild natural environments, eating good food, and sharing your experiences with other like-minded people, this is for you!

In 2016 Paul Brocklehurst and Blanca Rubí are hosting a week-long retreat in the Pyrenean mountains, close to the French-Spanish border. Our aim is to provide opportunities for small groups of up to 10 people, all of whom have a connection with stuttering, to walk, talk, and share experiences in the midst of one of the most spectacular and beautiful natural environments that Europe has to offer.

There are still spaces free on the walk and talk. Both PWS and their partners welcome.

No, a quick cure for all is far away.

The author of this article is completely misinterpreting the likelihood of a cure: read here.

But of course that will prevent virtually no mainstream journalist and desperate pws to jump on the bandwagon.

Let me clarify the stuttering mouse hype:

1) this mutation as far as I understand occurs in 5% of all people who stutter. So even if those people could be cured, the remaining 95% would not.

2) even if the mutation is proven to cause it and we would know the causal link between mutation and neurobiology vulnerable to jams in the brain, there is no guarantee that the damage done by the mutation change be counteracted.

3) even if an antidote to the mutation can be found, e.g. by providing the body with the missing proteins that the mutation did not produce, the protein might have been critical for proper development of neurobiology and thus will only help children who are developing their neurobiology but not adult brains. A bit like it is too late to use better cement once the house is built!

4) even if an antidote exists, it is not clear whether it has side effects.

Nevertheless,

1) a hype for a cure, even if completely misguided, could lead to political pressure to put much more money into stuttering. Why are you financing stuttering research, you terrible politicians??? Do you want to be responsible that little stuttering kids are cured?

2) it is the first example of proving that genes are correlated with stuttering behaviour and untangling the causal link will definitely help us understand at least 5% of stuttering.

"Stuttering" mice make us fluent?

They managed to create a stuttering mouse, or let be more precise they created a mouse that has the same gene mutation than a subclass of people who stutter and that shows an abnormal "speech" pattern.

This is significant as we are moving out of the soft psychosocial research arena with weak research standards to a more rigorous research arena with full-time scientists who have been trained to this kind of stuff for many different disorders.

I predicted this development at the discovery of the gene mutation.

Read the article in Cell here.

BREAKING NEWS: The era of sub-typing has started!!!

OK, I am a bit late at responding but there are exciting new developments in the genetics and brain imaging of stuttering. And you should listen to StutterTalk's Peter Reitzes interview with Denis Drayna, but listen carefully and rewind a few times as he throws around all kind of protein names.

The essence is: We have found another protein complex (affected by other gene mutations) that disturbs the normal functioning of a nerve cell in very similar aspects as the previously found protein complex. Imagine you find that the postman has a limp and then you find that the postman's car is slow so you can argue that it is about the slowness of the mail delivery that is at the core of the problems. And that is also what Dennis suggested: at least some stuttering might be part of issues with "moving things around in the nerve cells (which can be quite long)" which are suspected causing all kinds of neurological disorders.


And I am happy to hear that they do what I asked them to do: Only brainscan people with the same mututation! This is the way forward in my view.

Of course we need to be careful:

• not all stuttering is driving by this.
• neurodevelopmental issues could affect similar areas but are driven not by gene mutation 
• Dennis knows much more about but again we have to wait years until he publishes it. ;-)

Will I meet you in Antwerp on February 27th?

What Causes Stuttering with Dr. Soo-Eun Chang

Check out Peter's interview with Soo-Eun Chang, who is a neuroscientist from the Speech Neurophysiology Lab at the University of Michigan and specializes in brain imaging young children: here.

If I get time, I will listen to the interview in full and make comments. After only 5 minutes of listening, I already have a different take on some statements! ;-)

How does Lidcombe work? No as they thought it would!

Lidcombe is apparently the miracle treatment for young stuttering children. A recent study by Franken et al. showed that another treatment based on Demands & Capacity theory is equally effective than Lidcombe, a behavioural therapy.

Many times I have said that I am not convinced that Lidcombe treatment is more effective than natural recovery, but they do claim that for a short-term control group the treatment group does much better. And I currently argue: yes that is true but only for those that would have recovered any way AND the therapists and kids know that they are being treated AND the kids know what is expected of them.

Of course, if Lidcombe claims to be a miracle treatment, I expect that they tell me what causes the miracle. And here, I say: they will not find anything. Many outcome studies of psychotherapies have shown that anything can work and that the key success factor is the patient-therapist interaction.

I often criticize the Australian but they did the right trial to look into it. An article on An investigation of the role of parental request for self-correction of stuttering in the Lidcombe Program. by Donaghy, Harrison, O'Brian, Menzies, Onslow, Packman, and Jones gives the answer I expected: nothing.

METHOD: Thirty-four parent-child dyads were randomized to two treatment groups. The control group received standard Lidcombe Program and the experimental group received Lidcombe Program without instruction to parents to use the verbal contingency request for self-correction. Treatment responsiveness was measured as time to 50% stuttering severity reduction. 

RESULT: No differences were found between groups on primary outcome measures of the number of weeks and clinic visits to 50% reduction in stuttering severity. 

CONCLUSION: This clinical experiment challenges the assumption that the verbal contingency request for self-correction contributes to treatment efficacy. Results suggest the need for further research to explore this issue.

So what really drives the treatment outcome?

And the same question goes to the Demands & Capacity treatment.