A slide presentation of the type of work done by the Movement Disorder Foundation in Australia

1. The Movement Disorder Foundation Connecting Limbs to Life And introduction to the Work of the Foundation

2. Two thrusts of Foundation support 1. Direct assistance grants to patients or organisations supporting them, with an emphasis on those in rural and remote areas. 2. Supporting Medical Research such as the FES for restoring movement to paralysed patients such as quadriplegics. FES = functional electrical stimulation

3. Example of a grant - 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

4. Example of supporting an organisation that supports those with disability The Berrima District Aero Club is a supporter of the Foundation. 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

5. Example of a 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 child’s face has been blocked by the Foundation for privacy.

6. Example of supporting a grant recipient 2007 grant recipient Amethyst Barnbrook who has phocomelia. She was born with no arms and one leg (seal syndrome). Ame used the grant to help obtain a University Degree in music sound production . Narooma Rotary identified Ame for the Foundation’s grant. Photos show Ame practising her trumpet playing and with a partner practising for Paralympic selection in sailing.

7. This fabulous young lady achieved her goal and is seen here at graduation. The Foundation regarded it as a privilege to support such an inspiring person.

8. Alison – a Paralympian - won Gold and Silver at the Sydney 2000 Olympics. Her grant monies were used to help with training costs. Alison suffers from cerebral palsy. It is role models like Alison who inspire others with disability to win their own personal gold medals in daily life. Grant recipient Alison Quinn (centre)

10. Supporting Medical Research and Development

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

12. 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. Elsewhere on this website you can see a short video of Anthony shaving himself for the first time in 20 years, not long after receiving the FES system. 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.

13. 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

14. Comment about support from the Movement Disorder Foundation by Prof P. Hunter Peckham, Ph.D made in Jan 2010 Prof Peckham is the Donnell Professor of Biomedical Engineering and Orthopaedics, Case Western Reserve University and it is this University that is a world leader in FES technologies. Hi Roly, …..here are some facts. There are several ways that Movement Disorder Foundation 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

15. 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 John 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” “

16. 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

18. 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