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www.emerge.org.auAnnual Report of Emerge Australia Inc. Formerly ME/CFS Australia (Victoria)

Making connections, changing lives for people affected by

ME/CFS and associated conditions

Annual Report 2014

2 Emerge Australia Inc. Annual Report 2014

CEO Report

As incoming CEO in the 2013-14 year, my

appointment was one of many changes during the

period. Others included an almost new staff team,

some new Committee members, a new location and

a change of name.

I am very excited by these changes and the

possibilities for the future. With a world-class

Australian research facility opened in November

2013 focused specifically on ME/CFS along with

a growing understanding of the condition in the

general public, we still have a long way to go but

there is more basis than ever for believing that ME/

CFS will be recognised as the serious condition that

it is.

Of course moving forward wouldn’t be possible

without, the work of those that have got us to this

point. I’d like to particularly thank Alison Copley

for her amazing hard work in establishing the great

body of information around the condition that we

now have – that work is continuing based on her and

her team’s hard work. I’d also like to congratulate

the Committee of Management for steering the

society through a period of significant change

with determination and focus, and for the support

they’ve provided me in my role. With the steady

presence of Laurence providing information and

education, our staff team now includes Membership

Coordinator Salam who is focused on streamlining

our membership communications process.

I am consistently humbled by the contribution of

our volunteers. Performing critical work such as

editing Emerge journal, answering calls and emails

from people looking for support and information,

managing our library, helping out at seminars and

other tasks too numerous to mention, they are the

backbone of the organisation.

As usual, funding for our work is an ongoing

struggle. We are always grateful to the Department

of Health in Victoria for their ongoing support, but

the constant search for funding to provide basic

services let alone for specific projects, takes a

considerable amount of energy. Our community

activists are an integral part of the ongoing search

for funds and we are particularly grateful to them.

Our annual strategic planning day in March

reaffirmed our direction and provides a blueprint for

the next three years that is focused, strategic and

builds on the responses of our member survey in

November 2013.

Being a member-based organisation ensures that

each and every member is critical to not only

providing direction for our advocacy work, but an

essential voice for that work – our role is to ensure

that every person with ME/CFS is visible and heard.

Remaining focused on the needs of the individuals

while ensuring a broad approach to policy and

public opinion is a big job, but one I am committed

to pursuing.

Amanda Kelly

Treasurer’s Report 30 June 2014

The financial year of 2013/14 has seen some tough

times, especially financially, for our organisation.

A deficit has been recorded which in effect means

reducing our equity position and having to call on

prior year reserves to fund the operations.

Amanda Kelly has been in the CEO position for

around a year now and has done a tremendous job

of managing the operations and keeping costs to a

bare minimum.

Changes have occurred with bookkeeping personnel

and Jill Byrne has taken over from Carol Owen. We

thank both Carol and Jill for their contributions.

Once again, Michelle from Top Class Accounts has

performed the audit and their continued support of

our organisation is warmly applauded.

Thank you to our many supporters and donors

who give us the ability to continue to provide core

support and services. Our financial position is

extremely tight and we urge all our supporters to

continue to help us so that we can make a difference

to the many people affected by ME/CFS.

Russell Smith MIPA; CTA

Treasurers Report

3Emerge Australia Inc. Annual Report 2014

Acting President’s Report

This year the organisation continued with its program of planned, strategic change.

At our Special General Meeting in March members voted to accept our new rules - which included provision for us to become a national organisation. Following a postal vote on preferred names, a second general meeting resulted in acceptance of a new name – Emerge Australia. These two significant changes are central to our goal of raising our profile and improving recognition in the community of ME/CFS.

The re-location to Prahran has been very successful and has enabled us to significantly increase our volunteer pool. The contribution of our volunteers is enormous and ranges from working on the support line, to helping with administration, running support groups, fund-raising, and of course being on the Committee of Management. A group of volunteers made a huge contribution to developing a new and very stylish event “High Tea for ME” held in the Melbourne Town Hall on Mother’s Day.

Our Members’ Survey helped us to identify which aspects of our service are most valued by our members and how we can improve these. Members indicated that top of their list is our quarterly journal Emerge. We have worked hard to maintain continuity of Emerge, despite changes in Editor and Medical Editor roles, to bring a more professional appearance to the publication. The survey also helped us to identify some services that take considerable scarce energy, but were not highly valued by members. This has enabled us to re-direct some of our resources to where they are most needed.

Talking to members at our annual seminar, it was apparent how important it is for members to have access to the latest research information. The development of National Centre for Neuroimmunology and Emerging Diseases (NCNED) at Griffith University is a very exciting development indeed for people with ME/CFS. This year we invited Professor Sonya Marshall -Gradisnik to speak and it was inspiring to hear of the new work being undertaken by this centre.

A key focus this year has been on strengthening partnerships – with NCNED, the other state bodies, and other organisations working with people with chronic conditions.

The year ahead promises more change as we introduce our communications strategy which includes a new logo, website and marketing materials. We hope these changes will help to bring a wider range of supporters on board.

These changes have been managed in the face of our continuing struggle to secure sufficient finances to ensure job security for our small team of staff, so establishing a more stable funding base will continue to be a priority for the committee and the organisation next year.

I would like to thank our outgoing CEO Alison Copley and her successor Amanda Kelly for their hard work and enormous commitment to the organisation, as well as our hard working committee of management and volunteers who put in many, many hours for our members. I’d also like to thank our members for their ongoing support of and contribution to our organisation.

Sally Missing


As at 30 June 2013 As at 30 June 2014

Assets

Current Assets

Cash at Bank $117,590 $112,605

Accounts receivable $520 $1,621

Cash on Hand $250 $250

Stock on Hand $4,669 $4,735

Total Current Assets $123,029 $119,211

Total Fixed Assets $6,405 $11,657

Total Assets $129,434 $130,868

Liabilities and shareholder’s equity

Current liabilities:

Accounts payable $2,414 $3,939

Income In Advance $10,205 $53,140

Other Current Liabilities $21,614 $10,501

Total current liabilities $34,233 $67,580Shareholders’ equity:

Retained Earnings $81,264 $95,199

Net Income $13,937 ($31,911)

Total shareholders’ equity $95,201 $63,288Total liabilities and equity $129,434 $130,868

Balance Sheet - Emerge Australia Inc.

As at 30 June 2013 As at 30 June 2014

Income

Sales $19,120 $12,283

Recurrent Government Grants $41,945 $43,028

One-off Grants $124,868 $62,418

Membership $18,600 $19,829

Gifts and Donations $34,866 $76,114

Interest $4,644 $2,452

Fundraising $41,795 $13,180

Other Income $2,969 $16,069

Total Income $288,807 $245,373Gross Profit $288,807 $245,373

Expenses

Accommodation $29,716 $33,259

Facilities and Equipment $6,395 $7,346

Staffing Costs $187,496 $186,619

Communication $9,019 $9,505

Emerge Costs $12,181 $17,180

Administration $23,227 $13,752

Program Cost $6,836 $9,623

Total Expenses $274,870 $277,284Net Earnings $13,9371 ($31,911)

Profit and Loss - Emerge Australia Inc.


Highlights

Changes to infrastructureMove to PrahranIn early August, with support from the Sir Wilfred Brookes Charitable Foundation, we moved to Chapel St Prahran. Being much more accessible (by train, tram and car) and much more central, we’ve had a strong increase in the number of volunteers and members be able to visit us.

New computersThanks to the Lord Mayor’s Charitable Foundation we were able to update our seriously outdated computers and ensure that all the volunteers and staff have access to the tools that they need in their daily work.

New members databaseAt a heavily discounted price, we purchased a new database to manage our member information. The new system is very robust and is specifically designed for organisations like ours to make sure our members, donors and supporters details are kept securely and easy to manage.

New nameIn March, members voted to change the name of the organisation to Emerge Australia. The new name contains the letters ME, but is much easier to pronounce than Myalgic Encephaloymelitis – and conveys a positive message about the hope of recovery and our continuing role in helping the condition to emerge from obscurity. The change of name heralds another chapter in the story of the society and takes us forward into the next decade.

High TeaAwareness Week in May saw us holding our inaugural High Tea for ME. With almost 70 attendees, special guests included Victorian Minister for Women, the Arts and Consumer Affairs the Hon. Heidi Victoria and her daughter, and the Mayor of Stonnington Cr Adrian Stubbs and his wife.

The event was designed to introduce ME/CFS to the general public and in that way increase awareness about the condition. The Hon Heidi Victoria spoke, highlighting the importance of understanding this condition and the work that the society and its members and supporters do in advancing the cause.

The event was listed on 30 online event listings, was printed in the Stonnington and Melbourne Leader newpapers, in Time Out Magazine and listed on the Melbourne Review website. It was also the subject of three weeks’ worth of Community Service Announcements on Joy 94.9 FM and mentioned on Richard Stubbs Thursday afternoon radio program on the ABC, as part of our general Awareness Week promotions.


Tasmanian awareness projectWith the support of a grant from the Allport Bequest we launched a project in Tasmania to increase awareness. The project included:

- A GP newsletter article including the latest International Consensus Guidelines and links to the 2013 Maes and Phillips and Dr Rosamund Vallings seminars

- A newsletter item for Community Health Centres and Primary Care Partnerships was distributed widely.

- The development of a school newsletter item and distribution of information to all Tasmanian Schools on our database.

- A Schools and Higher Education Seminar

Media coverageDuring and around Awareness Week, we had some great media coverage.

- 7.30 Report TAS on Friday 16th May featuring Prof Sonya Marshall-Gradisnik (NCNED), Dr Greg Schwarz, Amity Slockee (affected by severe ME/CFS) and Hobart Support Group leader Lucy Corrigan discussing the issues that concern the ME/CFS community.

- Richard Stubbs interviewed Dr Nicole Phillips on 774ABC Melbourne Afternoon program.

- Articles appeared in: The Age, The Herald-Sun, The Canberra Times, The Mercury, Stonnington Leader Press

SeminarsIn September, Prof Michael Maes spoke to an audience of 100 people about the immune pathophysiology of ME/CFS/FM and Dr Nicole Phillips spoke about suffering and a way forward. As psychiatrists, both speakers focused on the biomedical aspects of the condition. While Prof Maes focused on the scientific aspects, Dr Phillips spoke on suffering, in the medical sense of the word, and the impact this has on people affected.

Highlights

Health Condition Support Grant awardedIn June, we were very pleased to receive a grant from the Department of Health’s Health Condition Support Grant to allow us to build on our Peer Support program. A great end to the year, with much promise for the essential program.


Major DonorsWe acknowledge the ongoing support provided by the Victorian Government Department of Health, and would also like to sincerely thank those individuals and organisations who have made financial contributions to support the organisation in the last 12 months. Generous contributions have been gratefully received from the following:

ACIAD Foundation Inc The Thompson Jenkins Endowment William Angliss Victoria Charitable Trust Commonwealth Bank Community Grants Oliver Goninen Australian Creative Collective Sir Wilfred Brookes Charitable Fund The Marian R Stobo Endowment The Allport Bequest Lord Mayors Charitable Foundation City of Maribyrnong

Estates and BequestsEstate of Miss Clare Braybrook Estate of Ms Liz McLennan

Community DonorsVawser & Associates Nigel Sinnott Tupperware Dandenong Support Group Wendy Maree Jones Mulgrave Country Club Neil & Darcy Shedden Pamela Joy Stone Blackmores Ltd Hoy Philida Sturgiss Shop Naturally Hendon Primary School Methodist Ladies’ College ShareGift Australia Georgia Eastley Edie Robinson Trent Saitta Melbourne Unitarian Church Maryanne Pritchard Norma Hawley RACT Insurace Peta Kelly Ashleigh Wood Jocelyn Cairns Jan and Dale Rebgetz Ritchies/IGA Supermarkets Aussie Farmers Direct Everyday Hero participants and supporters Our members and supporters Awareness Week participants

Donors, Bequesters, Volunteers and Support Group Leaders

Irene Herceg Suzy Coulson Richard Johnson Karen Sedgwick Natalie Parera James English Kristina Hone Divya Chawla John Lombardo Clare Hughs Murphy Woods Nicala Davis Tess Hosken Angie Szmorag Cressida McDermott Eva Domsek

Jamie Stacey Mohammed Faizuddin Tania Ratnayake Janet Gray David Price Sheryl Findlay Nicola Reiss Clare Huntley Kurtis Young Emma Della Sale Chenhong Xu Trudy Simpson Elle Sweet Lauren Treby Kaz Treby Dale and Jan Rebgetz

Support Group LeadersLois Bakic Albury/Wodonga, NSW Jane Berman Café Club ME/CFS, Inner and Outer East Melbourne, Vic Christine Bryar Ballarat FM and MECFS, Vic Jan Burke Richmond ME/CFS Café Social, Vic Colin Corkery Croydon ME/CFS, Vic Lucy Corrigan Hobart, Tas Georgina Dodson Shepparton, Vic Helen Gillett East Gippsland/Sale Café Social, Vic Gabriele Kearle Hobart Café Social, Tas Deena Lane Laurieton, NSW Kitty Deborah Lobert St Kilda, Vic Peter McKinon Inner West Sydney, NSW Michael Craig Launceston, Tas Victor Keith Rolfe Frankston FMS/ME/CFS, Vic Rosemary Smith Eastern Suburbs, Vic Sheryl Somerville Geelong, Vic Bronwyn Sonter Tweed Heads, Qld Annette Stewart Richmond Café Social, Vic Rohan Storey Inner Melbourne and Outer East, Vic Judy Taylor Bentleigh Bayside, Vic John Stephenson Wollongong ME/CFS/FM, NSW Jessica Wynne Ballarat ME/CFS , Vic

Volunteers

Thank you!

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