Mother blames herself for therapy failure

Here is another story of a mother where the Lidcombe magic did not work, and again she blames herself because the scientific outcome studies are so convincing.So it must be her fault:

I am a mother of a boy who just turned four and has been in Lidcombe for over a year.  We have barely missed an appointment in that time and I unless my son has been sick I have always implemented the home treatement.  We live in Australia and attend a private clinic in Sydney... I guess the family history is pretty strong. 

...  Am even a bit nervous writing to you and reading your site, as of course I want to believe my son will speak fluently forever aqnd never know he stuttered.  After another relapse, and my son still being in stage one of the programme after approximately 13 months of non stop weekly treatment I have started to wonder what is going on and if there is other treatment available.  Also

Is Elsevier suffocating yet another stuttering conference?

Earlybird* member of IFA	€574.08
Earlybird* non-member	€693.68
Earlybird* consumer*	€418.60
Student**	€358.80
Conference dinner	€83.72

Have a look at the IFA Congress 2012 page, and see yet again what happens when the organisers are not doing the work themselves but outsource to Elsevier. Let me make a quick calculation: cheapest possible with early bird. The student fee is the cheapest with 360 € plus 80 € conference dinner. So 440 € plus 4 days accommodation (lets say cheapest 50€). So we are at 640 € plus travelling. Let's say from Britain: 150 €. So we end up with roughly 800 €. And that is the very cheapest! Which student can pay that, except if it comes from a research grant.

If you are a consumer (i.e. stutterer) or a therapist, you must pay at least 1000€. If you come from overseas, probably 1500 or more. That pretty much excludes all except the richest countries.

The key is that Elsevier is taking a profit and you have to pay VAT. And they would claim that they have to pay staff and website. But that is a semi-lie as their staff probably handle 10+ conferences each, and most admin is done by the website.

1.5 years to write four pages!

The luxembourgish audiophonological institute has finally managed to produce a leaflet for stuttering kids. It took them about 1.5 years for four pages, even though I have given them a corrected version of their old leaflet.
It's in German and French, and I have to say that at least I cannot disagree with what they wrote, only the infantile font they used. They used to write that stuttering can be due to psychological stress from their social environment but not anymore. Progress has arrived in Luxembourg. See here.

(Thanks to Lukas for telling me about stuff happening in my own country!)

Happy New Year!

I wish you all a Happy New Year. I know I have not been keeping up with my regular posts. The next months will be a bit stressful because I have to read 3000 pages for an exam (CFA Level 3) and I need to get my book published.

But I do have plenty of material for posts and try to make more time for the blog.You can find my prediction for 2012 on StutterTalk. As usual, I am not very happy with my StutterTalk performance. I keep on making grammatical mistakes, phrase my ideas in strange ways, or just have strange ideas. I am just not good at on the spot performance. I also see that at Toastmasters. I really need to work on that part more... The only type of short-term performance I am good at is making jokes on the spot. Or at least, I think I am. But trying to say something intelligent usually fails to be so...

Oh, and if you want to be a guest blogger, just email me!

BREAKING NEWS: ENDO STOPS PAGOCLONE.

I have breaking news for you. Endo, the phamaceutical company owning Pagoclone, will stop the trials on Pagoclone completely and focus on their core business model.

As I have already announced, the Phase II trials did not go well (or well enough).

A few thoughts:

1) Endo spent millions on this. Now you know why pharmaceutical companies need to earn a lot of money on successful drugs because they spent so much on those that don't make it!

2) People need to ask themselves why they were part of the hype. And why they interpreted the Phase I and IIa so positively.

3) Thanks to all those who have worked hard to run the random control trials, especially Jerry Maguire. I never shared their enthusiasm, but in science you need to take risks and try it out.

4) This trial has given us information about stuttering, just not the one we want. Endo now has a large sample of control data. We now know much more about the placebo phenomena in stuttering. That is very valuable information, if it is published in a paper...

TED Talk on the brain

For a visually beautiful introduction to the brain and how scientists are measuring the structure and gene activity. Check out the TED TALK by Allan Jones. You can even access the data on-line. Download the software and zoom into the brain. These maps are important to study brain disorders, including stuttering. As far as I know, no-one is using these maps in stuttering, or working on building up a database of dead stuttering brains.

Would you donate your brain? I am not sure I would. Slicing up my brain would inevitable lead to my final destruction... even though it won't really matter because I am already dead at that point!

I also wonder whether you need healthy, fully developed, and not yet declining brains, ideally 25 years of age. Foundas did some research on the anatomical structure of stuttering brains. But I am not sure if they were dead or not.

(Thanks to Will for pointing this video out to me!)

Paris: ce lundi ou mardi soir?

Je suis à Paris pour un business trip du lundi au mecredi. Mon hotel est près de George V. Si quelqu'un est intéressé d'aller boire un coup le soir, email me under tom dot weidig at gmail dot com!

Text me under 00352 621 432263.

Sanne Hans: A true role model...

Another video from Sanne Hans (Miss Montreal) with a good song Addicted to Crying. She is a real role model for people who stutter and for the public. And not one of those Joe Bidens or Emily Blunts that I and no-one else has ever heard stuttering publicly but I have to endure their story on how they overcome their stuttering by doing XYZ...

It could be so easy

In a sense this is a perfect scenario for those advocating open stuttering, and a slap in the face for those who do not and preach we should not. This young singer very clearly stutters and struggles at time. But she is so relaxed, funny, and just gets on with speaking. And she is a good singer (check at 3:10)

Notice that the audience is not at all embarrassed. Why? Because she is not embarrassed! Isn't that what people sometimes tell us: What's so bad about stuttering, you are just not so fluent. So what? Is stuttering really purely neurological?

Good mix of keynote speakers

Check out the keynote speakers at the Antwerp Conference: here. It's a definite improvement over last conference. Check also the emergent topics in fluency research: here. This session is for young researchers to present their findings. The conference organizers have definitely taken feedback on board (for example mine), and improved the setup. I will most likely be at the conference, and might propose a contribution.

First Stuttering Conference in India!!

My good friend and TSB supporter Sachin asked me to put up a link to the first Stuttering Conference in India: check here. He told me that I have many "religious" fans in India!

The meeting is held from December 28th to January 1st in Bhubaneswar (Orissa) on the East Coast. If you live in India, consider taking part! Such conference are a great opportunity to know more about stuttering, possible treatments, and about how other people who stutter deal with their handicap and life.

Mmmmm now that I think about it. I have never been to India... :-)

Stuttering research goes biochemical

Stuttering research is entering a new phase, the biochemical phase. As far as I know, it's the first research that deals with fundamental biochemical aspects of our brain that are linked to stuttering via genetics research.

Kornfeld on what the three mutations found by Dryana's group do to possibly 10% of us:

...two mutations appear to trap the proteins in the cell’s protein manufacturing center, though some get out before being destroyed. “It’s not an all-or-nothing thing,” Kornfeld says. “Of the material that does get out, its activity is normal.”
But the third mutation causes a larger folding problem and the protein is destroyed just minutes after being made.

I will write more on this in the next post. Fits well into my picture of stuttering...

Kornfeld on therapy: (so you can keep your dream of a cure alive! ,-)

Such findings offer a glimpse at possible future therapies for stuttering. For two of the mutations at least, the problem is not that the protein can’t function, but rather that it

Questionnaire on Stuttering

Lloyd asks for our support:

I am conducting research about employment and people who stutter for my Master of Public Administration degree at Baruch College in New York City. I have created an anonymous on-line survey.

I am writing to ask if you know people who stutter and fluent speakers who might like to fill out this survey. I am looking for as many unique responses (from both groups) as possible. I encourage you to take the survey as well.  The survey queries attitudes about the Americans with Disabilities Act, among other things.  While this may not be germane to a European audience, I would really like as many respondents as I can get.

Gene therapy for the blind

William pointed me to a BBC report on gene therapy for the blind. I am sure it's still decades away, and might not even be possible theoretically. The intervention is probably very local, but the damage to the speech system and possibly adaptation is distributed.

Think of bad genes as mistakes in a construction plan for a house. Once the house is built, correcting the mistakes are not helping. Of course, the brain is a bit different, because genes instruct the cells to build proteins for a life time. However, the main fibre structure are set at early age and never change again.

The Therapist-Patient dictionary

Here is the therapist-patient dictionary. It is actually designed to understand British people, but works equally well for understanding therapists when they talk to you, the patient!!!

Seriously, that's what you have to face up to when you try to discuss science with them! In a clinical environment, I can kind of understand the logic but not in a scientific debate!

Brenda Carey changed her website!

A reader made me aware of irresponsible marketing by Dr Brenda Carey. She has now changed her marketing strategy from a misleading "Stop Stuttering with ..." to a reasonable and factual "Stuttering Specialist Dr Brenda Carey": check out the website. She and her team are definitely stuttering specialists. I might not agree with everything they do, but, if you lived next door to their practise, I would not hesitate to suggest that you take your child to them.

Interestingly, she changed the text from "..what options are available to stop stuttering" to "what evidence based treatments are available to reduce your stuttering and improve your communication." I would have added "reduce your fears" or "improve your well-being".

Antwerp Stuttering Conference

Check out the announcement for the Antwerp stuttering conference in March 2012. I attended last time. My two memories are that I was utterly bored by two key speakers (one of them talking about how to set up a questionnaire!), and on getting nearly sick on eating mussels! I hope they will change the format a bit and have more panel discussions. Debates not monologues!

But overall, a cheap conference worthwhile attending, even if it's only for networking.

Will she change her website?

Check out Ora's question relating to my post on the unethical marketing of stuttering therapy. He got a reply from Brenda Carey:

Ora, I do thank you for your helpful comments. I certainly did not intend to mislead, and will be changing the wording of my site and its address promptly (as soon as I have the tech support). Regards, Brenda Carey

As in politics, watch their actions and not their words. Let's wait and monitor the site. But as she writes, she needs to find another web address.

Thanks to the reader who made me aware of the website, and all others who supported my post and put ethical standards above sensitivities of a paid professional!

Stop Dr Brenda Carey

[The situation has changed after writing this post, and Brenda Carey has changed her website. Please see here.]

A reader has pointed me to this rather outrageously marketed website Stop Stuttering by Dr Brenda Carey. A highly irresponsible marketing strategy if you ask me: to suggest that you stop (a marketing place holder for cure?) stuttering with her, even for kids. The sentence "Stop Stuttering with Dr Carey" reads in parents and pws's mind as "Dr Carey can make you stop stuttering".She falls below the ethical standards that I would expect of a therapist.

Judy Kuster's International Stuttering Awareness Day (ISAD) Conference is open until October 22nd, 2011. It's the 14th conference that she has organized and there are always some interesting articles: people who stutter and clinicians sharing their experience. Usually, I get an email asking to publicize the event, but not this year maybe my blog has ceased to be important...

Check out Drayna's summary of genetics results. I plan to ask a few questions.

You can leave questions for the panel of experts in Office Hours.

Have a look at the conference. She does a great job to get people to write and debate. And you get a feeling of how the Internet web pages looked fifteen years ago! ;-)