The Movement Disorder Foundation

And introduction to the Work of the Foundation

Two thrusts of Foundation support

1. Direct assistance grants to patients

2. Supporting Medical Research

eg the FES initiative for restoring movement to paralysed patients such as quadriplegics FES = functional electrical stimulation

Keegan Rees

Grant recipient Canowindra 2009

Premature birth – hydrocephaly – physical and intellectual disabilities

Monies used to buy computer equipment for educational needs and a walking frame.

David Bigg of Canowindra Rotary was instrumental in facilitating this grant

The Aero Club is a supporter of the Foundation for Fundraising

In 2009 the Club identified the special learning programme at Bridges For Learning for a Foundation grant. This programme helps children with disability to make the transition into mainstream schooling

Chris Byrne from BDAC was instrumental in facilitating this grant

– Clare Croker grant recipient with 2008. Cerebral Palsy Grant used to help

buy a new wheelchair with assistance . from Goulburn Rotary This has

helped Clare achieve an important . level of independence Clare was

identified as a grant recipient by Robyn Thurling representing

. Goulburn Rotary Letter below from ’ the Clare s family

Bega 19/6/08

Colleen Barrett and father Richard

Colleen has cerebral palsy and moderate intellectual disability

Grant used for modifications to Colleen’s home and family vehicle to assist her care

Colleen identified as a recipient by Bega Rotary

Geoff Purss from Bega Rotary was instrumental in facilitating this grant

A three year old girl who suffers from cerebral palsy

In 2006 she received a Foundation grant to obtain a Hart Walker to enable her to learn to walk

She was identified as a recipient for a grant by Ken Adams of the Rotary Club of Bowral and Mittagong

Her parents requested that photos of her not be taken at the presentation ceremony, but provided this photo of the walker in action for the Foundation.

The patient’s face has been blocked by the Foundation for privacy.

2007 Grant Recipient Amethyst Barnbrook who has phocomelia. She was born with no arms and one leg (seal syndrome)

Ame is using the grant to help obtain a University Degree in music sound production

Ame is seen practising her trumpet playing and below is with a partner practising for Paralympic selection in sailing.

Grant recipient Alison Quinn (centre)

-Paralympian and Gold Medal winner Sydney 2000

- monies used to help with training costs

Philosophy “Give a man a fish and he eats for one day. Teach a man to fish and he eats for a lifetime”. Attributed to Confucius

Anthony Cleary - the first NSW quadriplegic recipient of an upper

extremity FES system to restore functional hand movement. Anthony is grasping the ice-cream with this FES-enabled system. Without the FES system, Anthony cannot use his hands to feed himself and needs a

carer to help with such tasks

Anthony became a quadriplegic after a football tackle that went wrong.

The Foundation initiated the Australian FES program via its relationship with

Professor Peckham’s Unit in Cleveland USA, and funded Anthony’s upper extremity FES system ( >$30.000)

Other Grant Recipient examples

Col – quadriplegic – night warning light on wheelchair and non slip food mat

Donna - via Royal North Shore Hospital Spinal Unit – computer

Eliza – post meningococcal amputee

Plus others

Supporting Medical Research and Development

The wonderful FES work being done in Cleveland by the team led by Professors Peckham and Keith has received deserved critical acclaim.

The Foundation has been a long time supporter of this work. Australian engineers have been funded to train at the Cleveland Unit, and to bring the expertise back to Australia, and then to collaborate with the Cleveland Unit to enable Australian patients early access to new treatments such as this.

The Foundation supports collaboration – we in Australia do not have the resources to re-invent the wheel.

If you click on the lettering below or separately on the file on the CD with filename: ‘TLC-ultimate 10 machines’ you will gain a greater appreciation of the hope for FES technology improving the lives of the severely paralyzed.

Click here to initiate movie

The FES ( functional electrical stimulation) program is centred in Cleveland, USA under the supervision of Professors Hunter Peckham and Michael Keith. Using sophisticated implanted devices (see figure), functional muscle activity can be restored to paralysed limbs, This enables the patient to use their hand again to feed themselves, use a computer and write. Carers are freed up as well. The Foundation formed a support link with the Cleveland Centre of Excellence for FES, and funded 2 Australian biomedical engineers to train there and then at the Spinal Unit at Royal North Shore Hospital (via 3 year Fellowships for Tim Scott and Deborah Sim). With suitable local expertise established, the Foundation funded Anthony Cleary (pictured above) to have an upper extremity system implanted at Royal North Shore Hospital. Prof Keith came from Cleveland to help with the surgery. This linkage and training process enables Australian patients to get earlier access to groundbreaking improvements in care. If you click where indicated you will see Anthony shaving himself for the first time in 20 years, not long after receiving the FES system. Alternatively click on the file on the CD with the filename ‘Anthony shaving’. In the picture above, Anthony uses his FES system to grasp an ice-cream to eat. Without the system operating he cannot grasp anything as his hand muscles are paralyzed.

Click here to initiate movie

Foundation Fellow Deborah Sim – pictured at the Cleveland FES Unit in 2003 where she trained under Prof Peckham before returning to Australia to work at the Spinal Unit at Royal North Shore Hospital. Deborah was identified for the Fellowship with the help of Prof John Glastonbury – former Dean of the Engineering Faculty at the

University of Sydney

Comment about support from the Movement Disorder Foundation by Prof P. Hunter Peckham, Ph.D Donnell Professor of Biomedical Engineering and Orthopaedics, Case Western Reserve University– Jan 2010. Hunters comments on MDF 2009.wmv

Hi Roly,…..here are some facts.

Support of MDF to Cleveland:There are several ways that MDF has provided support in Cleveland.  First, the Movement Disorder Foundation enabled a unit to be established in Australia to bring FES technology into the spinal injury unit at Austin Hospital in Melbourne.  We had tried several times in Sydney, but the SCI unit there was not able to be organized sufficiently to participate in the clinical trial. The Movement Disorder Foundation  was absolutely essential in making this activity happen, both by supporting the activities of the Cleveland unit to come to Melbourne, but also to explore options in NSW.  This resulted in several patients being treated with implanted neuroprostheses in Australia. 

The Movement Disorder Foundation  also supported two fellows to come to Cleveland for training.  The first, Tim Scott, pursued establishing a unit prior to returning to obtain his medical degree, and the second, Deborah Sim is now completing her PhD in Cleveland.

Third, the Movement Disorder Foundation also supported the establishment of a brain interface lab in Cleveland, in the facility of Dr. Dawn Taylor.  This was the world's first laboratory to demonstrate brain control of an implanted FES hand system, which has not been duplicated since.  This was the start of translating brain interfacing out of the animal laboratory and into clinical research. 

Hope that this helps.  If you need more, please let me know.Hunter

Presentation of Appreciation Certificate to Prof Morris Westmead Hospital 1996

The Foundation has had a long supportive association with the Movement Disorder Unit at Sydney’s Westmead Hospital. Seed funding was

supplied to help Prof Morris establish the Unit. A Foundation Fellow (Dr Leo Davies) trained at Harvard under Professor Robert Young and

returned to the Westmead Unit to complete the Fellowship. Dr Davies is now a Neurology

Professor in Sydney (RPAH)

Foundation funding has helped Prof Morris to create a video library of Movement Disorders to

help doctors with diagnosis

In the words of Prof Morris to the Foundation:

“ I have always greatly appreciated the seminal role which you played in establishing our Movement Disorder Laboratory all those years ago”

“

An example of the work being done at the Westmead Hospital Movement Disorder Unit for patients with Movement Disorders such as Parkinsons Disease, Tics, Tremors, and Dystonias.

Deep Brain Stimulation ( DBS) is a method of helping to restore mobility to patients with severe Parkinson’s disease and dystonias. See the adjacent diagram

Click once on the wording DBS stimulator below and wait a few seconds or open video separately on the CD (filename: Westmead DBS patient example). It shows a patient from the Westmead Unit being assisted by deep brain stimulation. When the DBS is off the patient is tremulous and immobile – imprisoned by the effects of Parkinsons Disease. Note the dramatic improvement when the Stimulators are switched on via a device held over the skin. Images provided courtesy of Professor Morris who can be heard giving the instructions.

Click here to initiate movie

Some other examples of Foundation’s work in Supporting Medical Research and Patient Care

Seed Funding and subsequent support for the Movement Disorder Unit – Westmead Hospital

Spinal Unit - Royal North Shore Hospital – initiation of the FES program for quadriplegia

Support for research into childhood epilepsy – A/Prof Bye – The Childrens Hospital

Support for the Pain Management Unit - Royal North Shore Hospital

Support for the Spastic Centre

The poet Ogden Nash wrote about fashions in medicine and warned people not to come down with the wrong disease as they would be “as lonely as a

woman in last year’s dress”

This applies to patients like those with movement disorders. Their disorders don’t quickly kill, but

they can sentence the patient and their carers to a life of imprisonment. Please consider supporting

the Foundation in its efforts to help these patients

Thank you for your interest.

All donated monies go to help the work of the Foundation.

For more information see: www.mdf.org.au