Parkinson`s SA Inc Annual Report 2013

Parkinson’s SA Inc Annual Report 2013-2014
Page 1
Patron:
His Excellency Rear Admiral Kevin Scarce,
ACCSC RANR, Governor of South Australia
Committee of Management:
President:
Assoc Prof John Power (Parkinson's
Research)
Treasurer:
Grant Males (Finance Manager)
Committee:
Alison Ballantyne (Nurse Educator and
Consumer Representative)
Barbara Celmer (Community Rep)
Paul Davies (Financial Investment Advisor)
Tony Harris (Consumer Representative)
Helena Kyriazopoulos (Multicultural
Communities Representative)
Geoff McKinnon (Business Expertise)
Lindsay White (Support Group Leader and
Family Carer)
Miriam Whitford (Marketing)
Assoc Prof Robert Wilcox (Neurologist)
Office Staff:
Christine Belford
Chief Executive Officer
Stevie Ferguson
Client Support / Educator
Anne Heard
Group Programs' Coordinator
Norman Radican
Aged Care Project Officer
Sharne West Social Worker
Paula-Jean Hayes
Social Worker
Lee Scammell Fundraising and Events Coordinator
Nicole White
Communications and Events
Coordinator
Anastasia Papas
Office Administrator
Judy White
Office Administrator
During my time with PSA I cannot
remember a year in which the
organisation has moved forward on so
many fronts.
Planning for the National Conference
has been a big undertaking but is well
under way and we are pleased to have
engaged two outstanding International keynote speakers.
Professor Roger Barker is a world leader on new
technologies for the treatment of Parkinson's and Professor
Caroline Tanner is renowned for her work on genetic and
environmental predisposition in the development of
Parkinson's. I would ask all members to lock in the
conference dates. We have kept the cost as low as possible
for people with Parkinson's and their family members.
Christine Belford (CEO) has been heavily involved in the
coordination of the re-branding of the national Parkinson's
image and there is general agreement that it is a much
more modern look and very eye catching. PSA was able to
launch the rebrand with the conference publicity which was
timely.
Members may not be aware of the great work that Paul
Davies and Christine have been doing at the National level.
Paul has been instrumental in negotiating for the return of
Parkinsons NSW to Parkinson's Australia and has been a key
player in developing a National lobbying strategy. Although
this would normally be reported at next year's AGM it is
timely to announce that Paul has been voted in as the next
President of PA to replace John Bird who is retiring from
the role and who has done an excellent job under difficult
circumstances.
Christine has been instrumental in obtaining a significant
Federal Government Grant to develop a national training
package for residential care staff, with PSA managing the
project. This grant has resulted in new staff and has in part
enabled us to expand our premises.
Isobelle Brett Office Administrator
Alexandra Hayes
Relief for Christine and Stevie
Office Volunteers:
Erica Benavides
Quality Systems
Glenys Besselaar
IT, Website
Sandie Clarke
Newsletter
Josephine Kirby
Administration
Monika Kruger
In Memoriam donations
Sandhya Mishra
Administration
Julie Pollard
HACC Administration
Meg Roddy
HACC data entry
Anita Wymer Library and records management
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Another major development that has occurred through
Christine's hard work has been the acquisition of Home and
Community Care (HACC) funding in our own right. Not only
has this expanded our funding base but it will enable us to
apply for future funding. I would like to sincerely
acknowledge the assistance given by Helping Hand Aged
Care in this area. Through Helping Hand’s auspice we have
been able to access HACC funding over the last three years
and this has been a major step in the development of PSA.
A highlight on the election front was the commitment from
both major parties to support Parkinson's nurses. The
current government had offered to support the Parkinson's
Nurse position at the Flinders Medical Centre and fund
three more positions.
Parkinson’s SA Inc Annual Report 2013-2014
Unfortunately due to budget restraints these have not
eventuated but we are determined to keep up the
pressure to have these commitments.
Late last year, Mr John Stockwell contacted the
Parkinson's office and indicated that he wanted to ride
around Australia to raise money for PSA. Coincidentally,
two members of the Committee of Management also
happen to be motorcyclists and were riding to the mid
north past John Stockwell's house, so they dropped into
his home to discuss his plan. Six months later, with great
support from the staff at PSA he had ridden around
Australia one and a half times, raising the public profile of
Parkinson's and raising over $32,000 for PSA. A particular
highlight of this journey was that due to John's infectious
enthusiasm the World Super Bike Meeting adopted
Parkinson's as their nominated charity, which was great
for raising public awareness.
We have had many great events during 2013/14. The Life
Style Weekend was held on the banks of Lake Bonney at
Barmera in March 2014. It was an informal family
focussed meeting with many great talks on a range of
topics relevant to people affected by Parkinson's. It was
brought home to me what a great team we have at PSA
when the caterer pulled out at the last minute. The PSA
staff quickly stepped in and coordinated the catering and
prepared the food. Although it probably added an extra
stress to the staff none of the attendees knew of the
issue. These weekends have been a great success and are
a great opportunity for both the city and rural Parkinson's
groups to link up.
I would like to thank my fellow Members of the PSA
Committee of Management for all their efforts this year. It
has been an exciting year particularly with the planning
for next year's National Conference. We have a change on
the Committee this year as our Treasurer, Grant Males, is
moving to Hong Kong with his family. Grant has given PSA
excellent service as Treasurer and will be remembered for
his great financial graphs. Although this would normally
be reported next year it is appropriate to welcome Steve
Whitehouse who has agreed to take on the role of
Treasurer.
Finally, I would like to acknowledge and thank Christine
Belford (CEO) for the great work she has done this year.
Christine has worked tirelessly on behalf of PSA on many
fronts. Through her efforts we have obtained more
funding, the Aged Care Grant, appointed new staff and
managed the PSA office while continually advocating on
behalf of people with Parkinson's.
Lastly, I would like to thank everyone involved with PSA
for their contribution in making this such a great
organisation.
The Unity Walk in September 2013 was a great success,
with the largest number of walkers so far. This continues
to be a great event for raising funds and public
awareness.
I would like to take this opportunity to sincerely thank the
staff at PSA for all their efforts over the last twelve
months. They continue to give great support to people
affected by Parkinson's through counselling, education
and coordinating our many support groups. I would also
like to thank the Support Group Leaders for organising
their respective groups. I would especially like to
acknowledge the late Jenny White for her lobbying efforts
on behalf of people affected by Parkinson’s through her
talks and her television interview on Channel 9 last
December in support of the Parkinson's Nurse position.
My sincere condolences go to Committee Member,
Lindsay White on Jenny's passing.
Parkinson’s SA Inc Annual Report 2013-2014
30th Anniversary Celebration
Committee of Management Meeting
Norman Weir Scholarship Winner 2013
Patrick Faulkner presents his thesis
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This year Parkinson's SA
celebrated 30 years of service
to the Parkinson's community.
This has been a highly
significant year in the history
of Parkinson's SA in terms of
recognition of the Association
and the needs of people with
Parkinson's
and
our
achievements in fulfilling our mission.
Since I came on board in September 2006, we have been
working towards and fighting for the ability to receive
Home and Community Care funding in our own right. Four
years ago we were privileged to have the generous
partnership of Helping Hand Aged Care and through their
auspice, access to HACC funding, which covered our Client
Services (counselling) position, staffed by Stevie Ferguson,
our Support Group coordination position, staffed by Anne
Heard and some management and administration costs.
This provided services statewide for all age groups.
This year we were finally able to apply in our own right
and received funding for additional counselling services in
the metropolitan area. This has enabled us to employ two
social workers, Sharne West and Paula-Jean Hayes and to
provide a solid Support Line service. Having achieved this
funding not only allows us to provide essential services to
our clients and know that we have a secure financial
bottom line, but establishes us as a viable and capable
organization with the capacity to apply for additional
funding in the future.
Another milestone in the quest to have better services
provided for South Australians with Parkinson's and other
Movement Disorders, has been our success in lobbying for
Parkinson's Nurse Specialist positions.
This has been an ongoing campaign since 2007 which saw
the establishment of the Parkinson's Nurse position at
Flinders Medical Centre in 2010. However the ongoing
funding of this position by the Department of Health has
been rocky and on several occasions we have had to raise
a campaign to 'save' the position. I acknowledge the
selfless work done in this regard by the late Jenny White,
her husband and Committee of Management Member,
Lindsay White, the members of the Brighton Support
Group and other individuals affected by Parkinson's.
Successful campaigning saw both major political Parties
commit to fund 3-4 positions if they were elected.
Although the Labor Party promise for 3 positions
additional to the one at Flinders Medical Centre remains
the topic of ongoing discussion with the Minister for
Health and the Department, these election promises were
a substantial acknowledgement of South Australians living
with Parkinson's and the ability of Parkinson's SA to bring
them into the political arena.
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Other significant developments in South Australia were
 the planning in earnest for the Parkinson's Australia
National Conference to be held at the Convention
Centre from 27-29 May 2015, including the securing of
two first rate international speakers
 the design and production of a new website for
Parkinson's SA, won from and provided by Kwik Kopy at
a value of $10,000
 the extension of our office area by an additional 30% to
accommodate new staff members
Parkinson's SA has also been an active member of
Parkinson's Australia by contributing in a range of positive
ways, especially in the following:
 Coordinating the development of the new Parkinson's
Australia brand, In This Together, by liaising with the
South Australian company chosen to undertake the
rebrand, On:Creative, and all the states and Territories
 Successfully applying on behalf of Parkinson’s Australia
to the Federal Government of Health and Ageing (now
Department of Social Services) for the organization's
first national wide funding to develop a training
package to improve the care of people with Parkinson's
in residential care. Over $500,000 has been allocated
for this project, which will continue over three years. As
well as the development of the package, the project
includes an evaluation by the WISeR group at the
University of Adelaide which will add significantly to our
knowledge of this area. Norman Radican was employed
from September 2013 as Project Officer for this highly
relevant project.
In September 2013, I was privileged to attend the World
Parkinson Congress in Montreal on behalf of PSA. It was
an uplifting and inspiring event, attracting over 3000
international delegates. I also visited the Parkinson Society
Eastern Ontario in Ottawa discovering how much the
issues and passion are the same worldwide.
Over the year, Parkinson's SA has been the recipient of
many generous donations, sponsorships and fundraising
efforts. In particular I would like to mention the Advertiser
Sunday Mail Foundation and Australian Executor Trustees
as well as some amazing individuals such as John
Stockwell, Drew Whenan, Dee Reynolds, Monica Hall, and
Craig Smith.
I would also like to pay tribute to the excellent
administrative support given SA by Anastasia Papas, who
left us in February after 6 plus years of dedicated service,
Judy White, and Isobelle Brett who joined us in November
2013. Along with our wonderful group of office volunteers
they allow us to achieve great things.
Parkinson’s SA Inc Annual Report 2013-2014
2013/14 was another successful year for PSA building on the foundations created over the past
few years. In what continues to be tough economic times in this State and in the not for profit
sector, PSA has been able to increase staff numbers and services. All this has been achieved whilst
increasing available funds and reducing the reliance on fundraising and donations. This year's
surplus of $125,282 represents an increase over last year of $192,604 and was ahead of the
budget expectation. This turnaround from a loss in 12/13 is predominantly due to the receipt of a
$133,500 bequest and the management fee contribution from the Aged Care project of $24,000.
Income
In gross terms, income increased this year from $388,865 to $867,311, again driven by the positive impact of the bequest
($133,500) and the Aged Care project ($217,717). The table and graph below highlight the relative performance of the key
income areas versus last year and their total contribution.
The strong performance in donations and grants is due to a combination of the recognition of PSA as a community service
provider and the focus of management in the completion of funding applications and the delivery of quality services. This is
evident in PSA securing the right to manage HACC funding without the sponsorship of Helping Hand which is a significant
achievement. The drop in fundraising is principally to lower levels of support for the High Tea and Corporate Lunch as well as
the discontinuation of the Putt for Parkinson event. Management and the Committee are keen to see this return to previous
levels in the year to come with increased focus on marketing and the delivery of a successful national conference in 2015.
Expenditure
Total expenditure for 13/14 was $724,029 representing a $285,842 increase over last year with the Aged Care project
accounting for $217,716. The remainder of the increase is due to the change in staff numbers supporting the larger
organisation. PSA continues to meet its internal KPI of maintaining a cost coverage ratio of greater than 3 months, whereby
Current Assets provides 3 months coverage of average operating costs. For 13/14 the metric result was 4.8 months and 6.7
months excluding the Aged Care project.
Transformation
Over the course of the last few years under the leadership of our CEO Christine Belford and the support of the Committee of
Management, PSA has been transforming the organisation in terms of increasing its financial reliance on guaranteed income
streams such as grant funding. The graph below highlights the growth in income and the level of external funding as a
percentage of over the past seven years. This transformation is essential in securing PSA's financial future and ensuring that
client services continue at the quality and coverage levels that have become the norm.
Parkinson’s SA Inc Annual Report 2013-2014
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We welcomed:

Twenty-two Parkinson's Support and
Education Groups across the state
continue
to
provide
valuable
information and support to people
living with Parkinson's and their family
members. Several specialised groups
continue to gather those with specific needs and interests
(e.g the 20s - 50''s Group, the Focus on Family Carers'
Group, the Parkinson's Plus Group, the Dystonia Group, the
Deep Brain Stimulation Group, the Shaky Faith Matters
group and the Brushlines Art Group). A range of
organisations also provide Parkinson's specific exercise
programs and receive referrals from Parkinson's SA.
The Parkinsons SA Speakers' Group was established to raise
community awareness of Parkinson's and to promote the
role of Parkinson's SA. This group consists of people with
Parkinson's and family members who are confident to
share their experience of living with Parkinson's. The group
has been very active this year spreading the word about
Parkinson's to a range of service clubs and community
groups, support groups and seminars. They bring a wealth
of information and their unique personal experience to
their audiences.
New Groups
A Progressive Supranuclear Palsy Group was established to
respond to the growing need to provide support to people
living with this Parkinson's Plus condition, and their family
members. Parkinson's SA participated in a seminar and an
expo organised by Erica Tilley, a speech pathologist to raise
awareness in the community and amongst health
professionals of the specific needs of people with PSP.
The Parkinson's Pedallers' Group was formed through the
initiative of Mike Hannan, a keen cyclist with Parkinson's
and enjoys monthly rides around Adelaide and the Hills.
Group leader changes
The passion and commitment of the many group leaders
across the state continues to be vital to the effectiveness of
groups in meeting the diverse needs of people living with
Parkinson's in the community. There have been many
leadership changes in the last year.







Alison Kokotis and Pam Sard who assumed leadership
of the Port Pirie Group
Rikki Howard who joined the leadership team of the
Brighton Group
Lyn Paunovic who joined Tom Trottmann in organising
the Onkaparinga Group
Ashley Hunt who joined Catherine Fletcher in the
leadership of the Southern Fleurieu Group
Pat and Peter Jennings and Ken and Julie Habner who
now share the organisation of the Adelaide Hills
Group
Wendy Merrett as the new group leader of the Mount
Gambier Group
Chad Wissler who has taken over leadership of the
Riverland Group
Karyn Powell, who has started a new exercise group in
Blackwood
We acknowledge the valuable contribution of:





PSA Life member Ruth Jenkins who retired from
leadership of the Murray Bridge Group after many
years
Geraldine Bonney from Boandik Lodge Community
Services who has facilitated the Mount Gambier Group
for several years
Lindsay White who stepped down from leadership of
the Brighton Group but continued in the group and on
PSA Board of Management Group
Simone Krohn from leadership of the Adelaide Hills
group after 3 years while continuing to conduct the
Parkinson's exercise program, Pat and Peter Jennings
and Ken and Julie Habner will share the tasks of the
support group
Grant Taylor who retired from leadership of the
Riverland Group
Group milestones and events
On 13 August 2013 members and past members of the
Brighton Parkinson's Group along with local politicians and
representatives from community organisations celebrated
the groups' 30th Birthday.
We also celebrated with the Adelaide Hills Group as they
marked 20 years of continuous support to the Parkinson's
community in the Hills.
Family Carers' Cruise - In March, 24 family carers enjoyed a
relaxing day cruising the Murray on the Captain Proud
Paddle Boat. This event was organised by the Focus on
Family Carers' Group which meets monthly at PSA, and
generously funded by Carer Retreat funding through the
Carer Support and Respite Centre.
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Parkinson’s SA Inc Annual Report 2013-2014
It provided a wonderful opportunity for participants to
have a break from normal routines and enjoy the company
of others.
Expanding Horizons through Art Program 2014
The Brushlines Art Group continues to meet weekly at
Parkinson's SA. The group has attracted beginners wanting
to explore their creativity and learn new skills and others
with a lifetime passion for Art. It provides not only a
valuable creative experience but also a social opportunity
for group members to develop friendships and support
each other in their experience of Parkinson's.
This year a Seniors Grant has funded the Expanding
Horizons through Art program in which people with
Parkinson's have explored different media with four local
artists. This program culminated in the Expanding Horizons
through Art Exhibition in September 2014 showcasing a
range of artworks from this program along with the work of
other artists with Parkinson's from around the state.
REGIONAL OUTREACH
During the year, Anne and Stevie visited groups in the
Upper South East , Mount Gambier, Port Augusta, Port
Pirie, the Riverland, the Barossa, and Lower North.
Raising awareness of Parkinson's in the Riverland
Education of Riverland Health Professionals
In March, local GPs and other health professionals were
provided with a high powered Continuing Professional
Development session on Parkinson's presented by
Associate Professor Rob Wilcox and Parkinson's Nurse,
Ruth Withey. A joint venture with the Riverland Division of
General Practitioners and sponsored by a grant from UCB,
the seminar was part of a PSA goal to improve services to
country people affected by Parkinson's.
Chad Wissler, facilitator of the Riverland Parkinson's group
spent many hours in local arrangements for the event, and
the staff of PSA volunteered their time to assist the
weekend to run smoothly. A number of generous health
professionals travelled to Barmera to present sessions.
The weekend was generously sponsored by Australian
Executor Trustees.
SEMINARS
Community Information Seminars
In addition to the monthly Learn Now Live Well seminars
for those with a recent diagnosis of Parkinson's and their
family members, we introduced bi-monthly Moving Ahead
with Parkinson's seminars with topics relevant to those
who have experienced Parkinson's for several years. Apart
from the information gained from the guest speakers,
these seminars introduce participants to the range of
services provided by Parkinson's SA and connect them with
others new to the experience of Parkinson's. A specific
Loud and Clear seminar was presented by Jane Backhouse,
a Speech Pathologist and Certified LSVT Practitioner, on
strategies to assist with speech.
Bi-monthly Understanding Parkinson's seminars were
scheduled as a general introduction for people with
Parkinson's, their family members, friends and the wider
community.
Group Leaders' seminars
Group leaders participated in three Group Leader seminars
over the year and had the opportunity to attend Learn Now
Live Well seminars on a range of topics. These are
opportunities for group leaders to update their knowledge
about relevant issues as well as share ideas about
programming and group facilitation strategies.
Riverland Learning and Leisure Weekend
Following the Health Professionals seminar, 73 people with
Parkinson's and their family members attended the
Parkinson's Learning and Leisure weekend at the Discovery
Holiday Park on the banks of Lake Bonney, sharing
information, experiences and strategies for keeping active
with Parkinson's. The program consisted of presentations
from a neurologist and other health professionals and a
range of Come ‘n Try workshops including Art, Tai Chi, and
kayaking. The aim of the event was to provide a balance of
learning and leisure activities and many took advantage of
opportunities to explore the local area.
Murray River Cruise - Focus on Family Carers
Parkinson’s SA Inc Annual Report 2013-2014
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Sharne West and Paula-Jean Hayes joined Stevie Ferguson
in April 2014. Collectively the team work the equivalent of
1.8 full-time hours.
Learning and Leisure Weekend at Barmera
March 2014
Increased numbers of people affected by Parkinson's
disease (Pd) were supported by telephone calls (450),
home visits, including aged care facilities (55) and face-toface meetings in the counselling room at Parkinson's SA
(46). Emails (42) were received and answered from people
affected by Pd.
In addition, the team participated in many of the support
groups PSA currently offers (Newly diagnosed, Younger
Onset, Progressive Supranuclear Palsy and general support
groups) giving talks about various subjects including
Anxiety, Preventing Falls and offering a Questions and
Answers opportunity.
Sharne and Paula-Jean introduced a 4 week 2-hour carers'
group 'Finding Calm and Caring'. The Lifestyle Weekend
provided an opportunity for Stevie to meet PSA members
and offer information and support. Stevie also went on a
River Murray Cruise for carers of those with Pd.
The support team delivered various training sessions for
health organisations. Sharne presented at a HACC
coordinators meeting, Paula-Jean talked with case
coordinators from both ECH and ACH. Stevie presented to
Disability Services and to 24 Occupational Therapists (OTs)
at the Repatriation General Hospital; two teleconferences
were provided to country SA OTs and Physiotherapists.
Stevie continued to deliver training sessions to residential
care health workers – 23 presentations were delivered
creating revenue of $3,900.
Stevie participated as a member of the Working Party to
assist in the development of a national training package for
staff in residential care. This was part of the Aged Care
Training Project managed by Parkinson's SA.
Bi-monthly participation at the Parkinson's Clinic at the
Repatriation General Hospital with Dr Margaret Bulling is
ongoing. The focus of this clinic is to develop a treatment/
rehabilitation plan to help manage the disabling effects of
Pd.
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Parkinson’s SA Inc Annual Report 2013-2014
The Best Care Outcomes for People with Parkinson's in Residential Care Project has successfully achieved
its major goal for the year by planning, developing, producing and distributing the National Aged Care
Training Package called Caring for People with Parkinson's.
The three year Parkinson's Australia national project, funded by the Australian Government Department
of Social Services under the Aged Care Service Improvement and Healthy Ageing Grant Fund, will
improve the quality of life and quality of care for people with Parkinson's who live in residential care by
providing training for the staff of Residential Aged Care Facilities to increase the staff's capacity and ability to provide best
practice models of care.
The National Aged Care Training Package, whose development was guided by a National Reference Committee comprised of
people with medical and academic expertise, as well as people living with or caring for someone living with Parkinson's, has
now been distributed to each of the Parkinson's Associations around the country.
The completed training package, which is evidence based and incorporates key competencies in the care of people with
Parkinson's, was developed by a National Working Group made up primarily of Parkinson's Nurse Specialists and includes a
PowerPoint presentation, utilising a video link and a case study, a Facilitator's Manual, a Tips Brochure and an evaluation form.
The National Aged Care Training Package will continue to be assessed and evaluated for the next two years by the Australian
Workplace Innovation and Social Research Centre, both for continuous quality improvement of the training and to measure
the longer term impact on the quality of care being provided to people with Parkinson's in residential care.
The Project Officer for the National Aged Care Training Project, continuies to work with Parkinson's Australia, the National CEO
Network and Parkinson's Nurse Specialists around the country to increase the capacity and resources of each state and
territory to market, promote and provide the training to as many Residential Aged Care Facilities as possible.
Parkinson’s SA Inc Annual Report 2013-2014
Page 9
John Stockwell's
epic journey:
Ride of my Life for
Parkinson's
Sandie Clarke, Newsletter editor and Ruth
Withey, Parkinson's Nurse - out and about at
the Government House Reception for the 30th
Life Membership for Peter Richards
Peter being awarded his Life Membership at the PSA
Annual General Meeting. Peter, pictured here with his
son, Craig, received his award from PSA President, Associate Professor John Power.
Committee of Management 2013/14
Back row L to R: Assoc Prof John Power
(President), Miriam Whitford, Helena
Kyriazopoulos, Lindsay White and
Geoff McKinnon
Front row: L to R Alison Ballantyne,
Grant Males (Treasurer), Barbara Celmer and
Paul Davies (PSA Representative on the
Parkinson's Australia Board).
Absent: Assoc Prof Rob Wilcox and
Tony Harris
Page 10
Parkinson’s SA Inc Annual Report 2013-2014
High Tea
Corporate
Lunch
Quiz Night
Unity Walk Septem-
Drew Whenan, pictured here with the
Governor and Mrs Scarce, raised
$15,000 for Parkinson's SA.
Parkinson’s SA Inc Annual Report 2013-2014
Page 11
23a King William Road, Unley, SA, 5061
T 08 8357 8909 W www.parkinsonssa.org.au
SUPPORT LINE 1800 644 189
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Parkinson’s SA Inc Annual Report 2013-2014