The Parkinson's Appeal for Deep brain Stimulation

 

NEWS
Dr Tom Foltynie (a member of team funded by the Parkinson's Appeal at UCL Institute of Neurology, Queen Square) publishes details of an exciting new Parkinson’s Trial looking at using a diabetes treatment for Parkinson’s.

Positive Trial Data suggests Exenatide has the Potential to be a Disease Modifying Agent in Parkinson’s Disease

Exenatide has previously been identified as having a positive impact on insulin resistance in the treatment of Diabetes
The Cure Parkinson's Trust, a charity founded by four people with Parkinson's disease, which is dedicated to facilitating and funding work towards a cure, announced the publication of trial results which suggest possible disease modifying advantages twelve months after cessation of exposure to Exenatide in patients with Parkinson’s disease.
Exenatide has previously been identified as having a positive impact on insulin resistance. In a Parkinson’s study published in May 2013, significant and clinically meaningful differences were demonstrated between the scores for those receiving Exenatide and the controls for both motor and cognitive symptoms 12 months after the start of the trial. Both the original and the follow-up trials were conducted at the UCL Institute of Neurology were funded by The Cure Parkinson’s Trust. The conclusion from the trial was that while the data must still not be interpreted as evidence of neuroprotection, they nevertheless provide strong encouragement for the further study of this drug as a potential disease modifying agent in Parkinson’s disease.

Tom Isaacs, Co-founder and President of The Cure Parkinson's Trust, said: “Although it is important to stress that there is still more evidence required before we can emphatically support the use of Exenatide in Parkinson’s, we are hugely encouraged by these findings. This is the first time in the twenty years I have lived with Parkinson’s that I have witnessed such robust data which supports the view that we can permanently alter the degenerative nature of Parkinson’s. The results of this trial also bear out The Cure Parkinson’s Trust’s policy to accelerate new treatments through conducting clinical trials on medicines already in use in humans. “

The results are published in the Journal of Parkinson’s Disease under the title “Motor and Cognitive Advantages Persist 12 Months after Exenatide Exposure in Parkinson’s Disease.” Ref:
Journal of Parkinson’s Disease 10.3233/JPD-140364

Progress Report - 2011 to 2013
The latest report on the fantastic achievements of the unit. Download the report (126KB PDF) >>


Unit celebrates 10 years of outstanding performance with the privilege of the Chair being renamed the Simon Sainsbury Chair of Functional Neurosurgery. In honour of the late Hon Simon Sainsbury, without whose foresight, enormous support and encouragement from the birth of The Parkinson's Appeal the Unit would not exist today.

During the presentation lecture Professor Marwan Hariz was acknowledged by past and present Deans as having led his team to make an outstanding contribution to patient care and scientific learning. To coincide with the anniversary of the unit the occasion was marked with an International Conference attracting over 170 leading neurologists, neurosurgeons and others from around the world. True testament to the acknowledgment of the team as a centre of world excellence.

Widespread media coverage of the teams success at treating Tourette's. SKY News, Five, The Telegraph and Evening Standard are just some of the media reporting on the pioneering treatment for Tourette's by the Unit of Functional Neurosurgery.
Link to SKy news feature with the team >>

Progress Report - Nov 2011
The latest report on the fantastic achievements of the unit. Download the report (53KB PDF) >>

Team’s work heralded as a new benchmark for DBS. The unit of functional neurology has just received the highest independent praise for its recently published paper on subthalamic stimulation for Parkinsons’s disease. The publication in the prestigious Journal of Neurology Neurosurgery and Psychiatry was a follow up of the first 79 patients operated with DBS in the subthalamic nucleus for advanced Parkinson’s disease. The lead author on the publication Dr Tom Foltynie expressed delight that the teams work had been described as setting a new benchmark in the editorial by Professor Paul Krack, neurologist in Grenoble. This public recognition by Professor Krack in the internationally recognised journal is a fantastic achievement for the team and credit for all the hard work under the leadership of Professor Marwan Hariz who expressed his personal pride for the unit, the patients and the Parkinson’s Appeal

 

Exciting new collaboration with physicists and radiologists. In September 2010, the Unit of Functional Neurosurgery team will be joining forces with the physicists and radiologists at Queen Square to start a project called –“The Assessment of changes in brain activation patterns in response to Deep Brain Stimulation in patients with Parkinson's Disease, using Functional Magnetic Resonance Imaging.”

Having performed extensive safety studies, we have concluded beyond doubt that we can safely perform fMRI scans among patients with fully implanted DBS systems. We now wish to study the change in brain activity that occurs in response to the stimulation being activated.

The principal objective is to identify which brain areas increase their activity and which brain areas decrease their activity when the deep brain stimulation is switched on compared to when switched off. We hypothesise that patients with an excellent response to DBS will have greater normalization of brain activity with DBS switched on than patients with a less impressive response to DBS, both at rest and during movement.

This will help identify whether differential response to surgery depends more on surgical factors or patient related factors (e.g. patient genotypes). Understanding the mechanism of action of DBS in PD will have potential benefits for those patients who are already recipients of DBS, and will ultimately help in the selection of the most appropriate future recipients of DBS.

Prestigous Swedish Award from Ulmea University honours Professor Hariz International Parkinson's researcher and neurosurgeon

The Swedbank´s  scientific prize to the memory of Amanda and Per Algot Mangberg is awarded to Marwan Hariz, an international authority in Functional Neurosurgery. 

"Marwan Hariz has had a very significant contribution in surgical treatment of patients with Parkinson's disease. He has been instrumental in successful development of stereotactic neurosurgery" says Professor Tommy Bergenheim, chairman of the Amanda and Per Algot Mangberg´s memorial foundation

Hariz is awarded for his outstanding contributions to the development and the international spread of this technique.

Marwan Hariz is since 2001 adjunct Professor at Umea University and since 2002 professor at the prestigious Institute of Neurology, University College London.

Professor Hariz receiving the prestigious award from Ulmea University, Sweden Professor Marwin Hariz receiving the prestigious award from Ulmea University, Sweden

Progress Report - Oct 2009
Download the report ( 82KB PDF) >>

Progress Report - Oct 2008
Download the report ( 82KB PDF) >>

Award Winning Film - 'RUTH' screening
'RUTH' directed by Michael Frantzis is now being screened in aid of the appeal. Details of the film and screenings can be found on the fund raising page http://www.justgiving.com/ruthappeal

Progress Report - Nov 2007
Download the report ( 82KB PDF) >>

Meeting of Minds - Auction at Christie's
Exceeds all expectations raising nearly £0.5m


HRH Princess Michael of Kent with Tracey Emin

Meeting of Minds Auction - 16 October 2007

In the presence of HRH Princess Michael of Kent raises almost half a million pounds

Basal Ganglia Speech Disorders and Deep Brain Stimulation 1st International Symposium, Institute of Neurology, Queen Square, London. 2 & 3 July 2007
Topics included:
Basal Ganglia and speech disorders; Deep Brain Stimulation overview and post operative management; Speech outcome following deep brain stimulation for Parkinson’s Disease and Dystonia; Measuring Speech-the challenge of movement disorders; Treatment for speech disorders following deep brain stimulation


Progress Report - May 2007
The latest report on the work of the Unit of Functional Neurosurgery
Download the report ( 82KB PDF) >>

International Workshop on Functional Neurosurgery for movement disorders and mental illness - Feb 2007 organised by the Functional Neurosurgery Unit at Queen Square, London was a huge success attracting almost 200 delegates along with eminent speakers from around the world.
Download personal learning from each session (146Kb PDF)>>

Progress Report - Nov 2006
The latest report on the work of the Unit of Functional Neurosurgery
Download the report ( 82KB PDF) >>

9 Nov 2006 - 10 Centre study across Germany, Norway and Austria published in the New England Journal of Medicine concludes that bilateral deep brain stimulation of the globus pallidus is effective in the reduction of dystonia symptoms and disability in people with primary generalized and segmental dystonia.
Download article summary (14kb pdf)>>

23 August 2006 - The National Institute for Health and Clinical Excellence (NICE) issue full guidance to the NHS in England, Wales, Scotland and Northern Ireland on deep brain stimulation for tremor and dystonia (excluding Parkinson's disease)
http://www.nice.org.uk/page.aspx?o=IP_319

Martyn Lewis CBE has generously given his support to the appeal by making a video and radio advert at BT Centre in London to promote the work of the appeal and its new donate by text service which was made possible by a BT Community Champion Award.

Martin Westall with Martyn Lewis promoting the donate by text service Martyn said "I think where there’s hope and potential to help people like Amy, we should all be prepared to do what we can and give what we can.”

Martin Westall with Martyn Lewis promoting the appeal
Listen to the advert here (380Kb WMA) >>
Watch the advert here (1.94Mb WMV) >>

Her Majesty's Ambassador Anthony Brenton 29 June 2006 - presented Amy Westall (UK) and Oksana Zabelina (Russia) awards for courage and raising awareness about Dystonia in the UK and Russia. The Ambassador praised the UK scientists involved with Deep Brain Stimulation and collaboration between the two countries.

Amy Westall receiving award from Her Majesty's Ambassador Anthony Brenton Amy Westall and Oksana Zabelina prepare to address the press conference
Her Majesty's Ambassador Anthony Brenton & Amy

Amy Westall & Oksana Zabelina address press conference

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Progress Report - June 2006
The latest report on the work of the Unit of Functional Neurosurgery
Download the report ( 51KB PDF) >>

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The Sunday Times feature Amy Westall in article about Deep brain Stimulation 5th March 2006 http://www.timesonline.co.uk/article/0,,2087-2070178,00.html

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BBC WORLD SERVICE - Outlook programme talks to three people with Dystonia who have had or considering Deep Brain Stimulation.
Listen to the interview here (5MB WMA) >>

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Fern Britton and Phillip Schofield interview Amy Westall 8th March 2006
This Morning interview Amy Westall about Dystonia and Deep Brain Stimulation Video clip 20MB WMV >>

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SKY News Live interview with Amy Westall
12th March 2006

Iinterview with Amy Westall about Dystonia and Deep Brain Stimulation Video clip 12MB >>

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Deep Brain Stimulation discussion and webcast from the Dana Centre, London
A great opportunity to see again the discussion on the treatment of conditions using Deep Brain Stimulation which took place in the informal surroundings of the Dana Centre, part of the Science Museum, London on the 15th March 2006

Organised by The European Dana Alliance for the Brain and the British Neuroscience Association to celebrate Brain Awareness Week, the evening was chaired by Mary Baker, President of the European Parkinson's Disease Association.

Speakers include two members of the Functional Neurosurgery Unit at the National Institute of Neurology, Queen Square, London:
Professor Marwan Hariz, Edmond J Safra Chair of Functional Neurosurgery
Dr Patricia Limousin, Consultant Neurologist.
Mr Tiipu Aziz, Consultant Neurosurgeon, Radcliffe Infirmary, Oxford
Mike Robins, one of the earliest patients with Parkinson’s Disease to have the operation.

Amy Westall (20) dystonia and Fergus Henderson International Chef with Parkinson's Disease, patients of Professor Hariz.

Webcast archive now available from
here >>

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DVD available of DBS for Dystonia Conference

'Marvellous; Informative; Enjoyable; Excellent; We gained so much; Outstanding; Thank you so much' said delegates from America , Holland , Belgium and across the UK

Attending the UK 's first International Deep Brain Stimulation for Dystonia Conference held at Belvoir Castle on 3 September 2005 organised by four people with Deep Brain Stimulation, family and friends.

You can share in this unique event thanks to the generosity of Medtronic who paid for the professional DVD of the day which brought together patients and contributions from:

Mr Richard Selway, Functional Neurosurgeon, Kings College

Mr Alex Green, Functional Neurosurgeon, Radcliffe Infirmary

Dr Steve Tisch, Clinical Research Fellow*

Ellie Borrell, Movement Disorder Nurse*

Elina Tripolita, Speech Therapist and Lecturer*

Clive Woodard, Medtronic

*Functional Neurosurgery Unit, National Hospital for Neurology and Neurosurgery.

Also Hannah Lund, Susan Baxter and Amy Westall DBS Patients.

Copies of the DVD were distributed to library authorities across the UK

Donate to The Parkinson's Appeal

Download a standing order form click here >>

 

PATIENTS' STORIES
Read about the experiences of people suffering from Parkinson's Disease and other neurological conditions >>

 

 

 

   
 
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