NEWS & EVENTS
Don't miss the next 'bumper' newsletter - it 's never too late to join TSAA and receive a copy. Membership form available on this website.
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Get active and join us in the Pub to Pub Fun Run in Sydney.
The Pub to Pub is on the 22nd August 2010. It starts at Dee Why running or walking along the beach and ends at Newport, Sydney.
It is a fabulous event full of community spirit.
Go to the Website Pub to Pub to register.
It is run by Rotary Club of Brookvale and you can fundraise via TSAA Fundraising Page at My Cause OR you can create your own Fundraising Page.
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NEW TSAA Online Forum
We are pleased to announce that the TSAA Internet Discussion Forum is now up and running.The forum will enable TSAA members from all around Australia to interact & chat online to discuss all aspects of living with Tourette Syndrome.
As it is a private forum for TSAA members only, we have allocated all current members with a TSAA Forum Registration Number for security reasons. You will be required to type in this number when you register for access to the forum.
Question - How do I find out my TSAA Forum Registration Number?
If you are a TSAA member fill out the online form at this link
http://www.perthtourettesyndromesupport.com/reg.html
If however you are not yet a TSAA member, you can become one for a small fee. Sign up online http://tourette.org.au/onlinereg.htm
For Forum access click this link http://www.perthtourettesyndromesupport.com/forum/
See you on the forum!
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Australia's First Deep Brain Stimulation Operation for Tourette Syndrome
Sixteen year old Bianca Saez had the worst case of Tourette Syndrome doctors had ever soon. Bianca's condition was such that she had to be institutionalised. But then Bianca saw a television report about Jeff Matovic, a Tourette Syndrome sufferer in the US who had undergone a successful Deep Brain Stimulation Operation. The operation had turned Jeff's life around and Bianca hoped it could do the same for her.
Brisbane Neurologist, Professor Peter Silburn had completed over 300 such operations but mostly on people suffering with Parkinsons Disease. The operation on Bianca to treat her Tourette Syndrome would be Australia's first. During the operation two electrodes are placed deep within the patient's brain where faulty neurones cause the Tourette's. The probes are connected to a battery which are placed in the patient's side. The electrodes basically reset the misbehaving brain cells and if it all goes to plan most of the tics should disappear.
A week after the operation Bianca had shown marked improvement and Professor Silburn was thrilled with the results. Although she had mild ticcing it was hoped that they would disappear within a month. Bianca was well enough to spend a weekend with her parents and Professor Silburn is confident Bianca will be able to return home permanently.
Selected Quotes from discussion with Professor Peter Silburn:
" …The risks of this surgery are significant, in the first instance it may not work. But in terms of harming someone, people can have a stoke, or there can be bleeding, or the leads can be put in the wrong place. And this can be irreversible, however the actual device can be turned on and off and usually brain tissue is not disturbed, so if it is not right the first time round it can be moved. Must be stressed, this surgery is very new and is only used in severe cases of Tourettes syndrome.
"…This technology does affect chemical messages in the brain, we also think it can effect how genes are turned on and off in other parts of the brain and perhaps how many cells can be made in the brain, although the latter is very experimental. The application of this technology is usually in movement problems such as Parkinson's Disease, Dystonia, GIAT disorders, Tourettes, Obsessive Compulsive Disorder, Depression and Epilepsy. Many of these conditions are due to a chemical imbalance, but the brain functions on electrical activity and chemicals and the two interact. There have been no direct studies on its effect and stoke.
"… because the surgery is very new for Tourettes we are still learning about how it affects things like Copralalia or the swearing. We are pleased that this is also decreased substantionally in Bianca's case. So overall we think we are enabling the brain to control itself. …
"…other patients that have been operated on that get a good 90% improvement in the first week show you can expect improvement to continue to 4-6 weeks and slight improve there after. Given that she is the first in Australia we will be watching her, (Bianca), closely, not just her motor tics and vocalisations but also her other outbursts.
"…Normally we like to wait for someone to be at least 12 and that is based on operations for other conditions. It is very new for Tourettes and so there is still an accumulative experience worldwide. Also it is well known that the motor tics and some of the vocalisations can ease as time goes on so the decision to operate in teenagers is based on observation that the tics and vocalisations and accompaniments, such as aggression and OCD are getting out of hand despite all the medical help at hand.
"…We performed this operation in St Andrews War Memorial in Brisbane. This is the first location in Australia, however other groups have the capability to do this operation, such as in Sydney, Melbourne and Perth.
"…the electrodes in the brain last life long, the impulse generator that is providing the electrical impulses requires replacement every 3-8 years, depending on how high an output you require. The replacing of the impulse generator does not require surgery on the brain, it's just at the end of the lead connection, not in the brain itself. So it is a relatively simple procedure. We do check how well the system is running and whether we need to increase the output with the patient's symptoms. The low maintenance for a device that is required to run as it does in the middle of someone's brain is a tribute to the scientist who developed the impulse generators and the electrodes.
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VOLUNTEERS NEEDED FOR TS RESEARCH IN AUSTRALIA
A study group in Sydney will be joining an international consortium of researchers to isolate some genetic markers for TS. This is the first substantial research project ever for us in Australia and a very important step. TSAA are asking for volunteers for genetic testing. They are particularly interested in families with more than one child or parent who has TS. The test is non-invasive and can be done in your home via a mailed out kit. There may be follow up questions at some point, but you will not need at this stage to present anywhere. Anyone who would like to participate, should email the office tourette@unwired.com.au with their details including address and phone. All information supplied to TSAA will be kept confidential and for the purpose of the research project only. At this stage all we are doing is collecting a list of those who would like to be contacted and once the research team are ready they will formally contact those on the list with a consent and information sheet which will explain the project in more detail.
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TSAA is currently organizing a DVD project to increase awareness of Tourette Syndrome. The project offers any primary school in Australia a free DVD - ' What is Tourette Syndrome?'’. The DVD was produced by the TS Association in 2003 in Australia, and it features explanations and interviews on Tourette Syndrome. Has your child’s school received their DVD? All schools have to do is contact our office (02) 9382-3726 and a DVD will be sent. This Charity believes in donating!!
The Pub to Pub is on the 22nd August 2010. It starts at Dee Why running or walking along the beach and ends at Newport, Sydney.
It is a fabulous event full of community spirit.
Go to the Website Pub to Pub to register.
It is run by Rotary Club of Brookvale and you can fundraise via TSAA Fundraising Page at My Cause OR you can create your own Fundraising Page.
We are pleased to announce that the TSAA Internet Discussion Forum is now up and running.The forum will enable TSAA members from all around Australia to interact & chat online to discuss all aspects of living with Tourette Syndrome.
As it is a private forum for TSAA members only, we have allocated all current members with a TSAA Forum Registration Number for security reasons. You will be required to type in this number when you register for access to the forum.
Question - How do I find out my TSAA Forum Registration Number?
If you are a TSAA member fill out the online form at this link
http://www.perthtourettesyndromesupport.com/reg.html
If however you are not yet a TSAA member, you can become one for a small fee. Sign up online http://tourette.org.au/onlinereg.htm
For Forum access click this link http://www.perthtourettesyndromesupport.com/forum/
See you on the forum!
Sixteen year old Bianca Saez had the worst case of Tourette Syndrome doctors had ever soon. Bianca's condition was such that she had to be institutionalised. But then Bianca saw a television report about Jeff Matovic, a Tourette Syndrome sufferer in the US who had undergone a successful Deep Brain Stimulation Operation. The operation had turned Jeff's life around and Bianca hoped it could do the same for her.
Brisbane Neurologist, Professor Peter Silburn had completed over 300 such operations but mostly on people suffering with Parkinsons Disease. The operation on Bianca to treat her Tourette Syndrome would be Australia's first. During the operation two electrodes are placed deep within the patient's brain where faulty neurones cause the Tourette's. The probes are connected to a battery which are placed in the patient's side. The electrodes basically reset the misbehaving brain cells and if it all goes to plan most of the tics should disappear.
A week after the operation Bianca had shown marked improvement and Professor Silburn was thrilled with the results. Although she had mild ticcing it was hoped that they would disappear within a month. Bianca was well enough to spend a weekend with her parents and Professor Silburn is confident Bianca will be able to return home permanently.
Selected Quotes from discussion with Professor Peter Silburn:
" …The risks of this surgery are significant, in the first instance it may not work. But in terms of harming someone, people can have a stoke, or there can be bleeding, or the leads can be put in the wrong place. And this can be irreversible, however the actual device can be turned on and off and usually brain tissue is not disturbed, so if it is not right the first time round it can be moved. Must be stressed, this surgery is very new and is only used in severe cases of Tourettes syndrome.
"…This technology does affect chemical messages in the brain, we also think it can effect how genes are turned on and off in other parts of the brain and perhaps how many cells can be made in the brain, although the latter is very experimental. The application of this technology is usually in movement problems such as Parkinson's Disease, Dystonia, GIAT disorders, Tourettes, Obsessive Compulsive Disorder, Depression and Epilepsy. Many of these conditions are due to a chemical imbalance, but the brain functions on electrical activity and chemicals and the two interact. There have been no direct studies on its effect and stoke.
"… because the surgery is very new for Tourettes we are still learning about how it affects things like Copralalia or the swearing. We are pleased that this is also decreased substantionally in Bianca's case. So overall we think we are enabling the brain to control itself. …
"…other patients that have been operated on that get a good 90% improvement in the first week show you can expect improvement to continue to 4-6 weeks and slight improve there after. Given that she is the first in Australia we will be watching her, (Bianca), closely, not just her motor tics and vocalisations but also her other outbursts.
"…Normally we like to wait for someone to be at least 12 and that is based on operations for other conditions. It is very new for Tourettes and so there is still an accumulative experience worldwide. Also it is well known that the motor tics and some of the vocalisations can ease as time goes on so the decision to operate in teenagers is based on observation that the tics and vocalisations and accompaniments, such as aggression and OCD are getting out of hand despite all the medical help at hand.
"…We performed this operation in St Andrews War Memorial in Brisbane. This is the first location in Australia, however other groups have the capability to do this operation, such as in Sydney, Melbourne and Perth.
"…the electrodes in the brain last life long, the impulse generator that is providing the electrical impulses requires replacement every 3-8 years, depending on how high an output you require. The replacing of the impulse generator does not require surgery on the brain, it's just at the end of the lead connection, not in the brain itself. So it is a relatively simple procedure. We do check how well the system is running and whether we need to increase the output with the patient's symptoms. The low maintenance for a device that is required to run as it does in the middle of someone's brain is a tribute to the scientist who developed the impulse generators and the electrodes.
A study group in Sydney will be joining an international consortium of researchers to isolate some genetic markers for TS. This is the first substantial research project ever for us in Australia and a very important step. TSAA are asking for volunteers for genetic testing. They are particularly interested in families with more than one child or parent who has TS. The test is non-invasive and can be done in your home via a mailed out kit. There may be follow up questions at some point, but you will not need at this stage to present anywhere. Anyone who would like to participate, should email the office tourette@unwired.com.au with their details including address and phone. All information supplied to TSAA will be kept confidential and for the purpose of the research project only. At this stage all we are doing is collecting a list of those who would like to be contacted and once the research team are ready they will formally contact those on the list with a consent and information sheet which will explain the project in more detail.
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"I Have Tourettes, but Tourettes Doesn't Have Me' This informative and moving documentary from the United States is available for purchase from TSAA. Order your DVD now! info@tourette.org.au or call 02 9382-3726
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Very Interesting Excerpt from Science AAAS - (Online Science Magazine)
14 October, 2005
News of the Week
MEDICINE:
Teenager's Odd Chromosome Points to Possible Tourette Syndrome Gene
A team of geneticists reports that it has identified a gene that the researchers believe causes Tourette syndrome when mutatedReports
Sequence Variants in SLITRK1 Are Associated with Tourette's Syndrome
Tourette's syndrome (TS) is a genetically influenced developmental neuropsychiatric disorder characterized by chronic vocal and motor tics. We studied Slit and Trk-like 1 (SLITRK1) as a candidate gene on chromosome 13q31.1 because of its proximity to a de novo chromosomal inversion in a child with TS. Among 174 unrelated probands, we identified a frameshift mutation and two independent occurrences of the identical variant in the binding site for microRNA hsa-miR-189. These variants were absent from 3600 control chromosomes. SLITRK1 mRNA and hsa-miR-189 showed an overlapping expression pattern in brain regions previously implicated in TS. Wild-type SLITRK1, but not the frameshift mutant, enhanced dendritic growth in primary neuronal cultures. Collectively, these findings support the association of rare SLITRK1 sequence variants with TS.
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TSA Victoria have released a new interactive educational CD Rom, called “No Way, Which Way?” This educational tool features interviews with members of the Association interspersed with factual and helpful knowledge about the difficulties of learning when TS is present. To purchase, contact TSA Vic on (03) 9845-2700 or via their website:
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