Annual Report 2018/19 Contents
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ANNUAL REPORT 2018/19 CONTENTS. OUR PEOPLE. OUR PEOPLE 3 FIGHTMND BOARD CHAIRMAN’S REPORT 4 CEO’S REPORT 6 REMEMBERING DR. IAN DAVIS 8 Bill Guest Pat Cunningham Neale Daniher Chairman Vice Chairman Patron 2018/19 RESEARCH PROJECTS 10 CAMPAIGNS & FUNDRAISING 16 FINANCIAL REPORT 20 Gary Nugent Dr. Trevor Chong Dr. Judith Slocombe OUR PARTNERS 22 Treasurer Lewis Martin Andrew Dillon Mark Evans FIGHTMND STAFF Jamie Howden CEO Bec Daniher Campaign Director Dr. Bec Sheean Research Director Katrina Parker Fundraising Director Adam Kinross Finance and Operations Director Andrew Holmes Communications Manager Anna Skelton Fundraising Manager Georgia Cornell Social Media and Campaigns Coordinator Lauren McKellar Campaigns Coordinator Dr. Davor Stanic Research Coordinator Magdalena Ojeda Database Coordinator 3 CHAIRMAN’S REPORT. AS I REFLECT ON THE FINANCIAL There are always extraordinary highlights to YEAR OF 2018/19, I DO SO WITH GREAT savour from every Big Freeze event at the MCG ANTICIPATION AND EXCITEMENT on the Queen’s Birthday, and in 2019, an array ABOUT WHAT LIES AHEAD FOR THE of ex-AFL champions and Australian female GLOBAL FIGHT AGAINST MOTOR sporting royalty led the charge for us. The celebrities that we approach to be involved in NEURONE DISEASE IN THE IMMEDIATE this amazing event always accept the invitation FUTURE, AND BEYOND, GIVEN THE and immerse themselves in the spirit of the event FOUNDATION’S FUNDRAISING with incredible enthusiasm and fun. SUCCESS, AND SUBSEQUENT MND RESEARCH FUNDING. To the 14 sliders in 2019, you are thanked from the bottom on our hearts. Without your Despite the joy of that success, there was a pall unconditional cooperation and support, we could of sadness that was experienced by everyone at not achieve what we have with this now iconic FightMND, and our supporting ‘Army’, with the event on the Australian calendar. terribly sad passing of a dear friend, inaugural Chairman and the visionary behind FightMND, The Big Freeze 5 extravaganza was a Dr. Ian Davis, in November 2018. resounding success with a total of $5.4 million raised during the campaign, which was greatly Ian was an inspiration to everyone who knew assisted by the generous contribution by the him, and he played an immeasurable role in Federal Government once again. establishing FightMND, and the progress made in clinical research into finding effective Both the Morrison Federal Government and treatments and a cure for the insidious disease the Victorian State Government have been that is Motor Neurone Disease. wonderful supporters to our Foundation over many years and have contributed significantly The courage and selflessness he displayed to our cause, allowing us to invest vital funds during his own personal fight against the to world-leading research. On behalf of the disease he fought so hard to eradicate for future Board, I personally thank the Hon. Greg Hunt, generations will be remembered by people Federal Minister for Health, the Hon. Josh To my fellow FightMND Board Members, many Finally, I wish to extend my thanks to Neale around the world affected by ‘The Beast’ as a Fydenberg, Treasurer of Australia and the Hon. thanks to you all for your individual and collective Daniher who, through immense personal true mark of the man he was. Daniel Andrews, Premier of Victoria, for their contributions to our strong governance. It is vital difficulty, has continued to play a vital role as the commitment to FightMND and the quest to find a that we remain a respected and agile Foundation face and voice for the cause. Neale continues to We are thankful to have had the privilege of cure for ‘The Beast’. and a leader in funding the best MND research put the fight against MND and our organisation having Ian positively impact our lives, and the worldwide that we can. first, supported by his loving family, and for that lives of all affected by MND, and he will be To the wonderful and committed staff of our we are eternally grateful. fondly remembered. We extend our love and Foundation, led by our CEO Jamie Howden, I thank all our donors, large and small, for support to Ian’s wife Mel, and son Archie, who I thank you all. Our small but passionate team your extraordinary contribution. The Australian Regards, will forever remain part of the FightMND family. in the office contribute countless hours of community’s financial support allows to fund the Rest in Peace Ian. extraordinary work to deliver several successful best research projects available and continue to campaigns and community fundraising events progress to our end goal of finding a cure for the 2018/19 was an extremely positive period for that enable FightMND to fund major MND disease that an average of two Australians die FightMND with the fifth annual instalment of research projects both domestically and from each day. Bill Guest the iconic Big Freeze at the ‘G and the fourth internationally. I am extremely proud of our team Chairman edition of Daniher’s Drive, highlighting our major and thank them for all they do. campaigns and yielding the best fundraising results for those two events since our inception in 2015. 5 CEO’S REPORT. Since our inception in 2014, FightMND has So while we can’t celebrate reaching our AS CEO OF FIGHTMND, I HAVE LEARNT invested $28.8M into MND research and ultimate goal at the present time, we can A GREAT DEAL ABOUT THE POWER $2.45M into purchasing vital care equipment celebrate where we have come from as a OF PEOPLE AND WHAT I HAVE LEARNT to assist with care of MND sufferers around Foundation and what progress has been made in ENTHUSES ME ABOUT THE FUTURE Australia. OF COMBATTING MOTOR NEURONE the research sector in the past five years. DISEASE. In the 2018/19 year, FightMND proudly We believe that more effective treatments of committed $7.6 million to the best and brightest MND will be available to MND patients within the Based on the work that our great organisation researchers in Australia and internationally next five years and that the global momentum of does, supported by our amazing FightMND so the brilliant work they do can continue. MND research is currently at its greatest. Army, I believe that the power of our people is We understand the fight will be long, and the making significant inroads in the fight against research will have its highs and lows but we The prospect of effective treatments and the ‘The Beast’. know we are in the fight and landing some global momentum is testament to the level of punches now. There is real momentum and that funds raised by our supporters, and where these We know that FightMND was initially established needs to be maintained so we continue to need funds have strategically and rigorously been and currently exists to fund world-leading, the support of the FightMND Army. directed – straight into the hands of world- cutting edge medical MND research to discover leading researchers and MND laboratories effective treatments and ultimately a cure for At FightMND, we say ‘It Takes People’ and throughout Australia and internationally. Our Motor Neurone Disease. the past year illustrated that once again. We loyal FightMND Army can feel justifiably proud of know that MND takes people. It takes people’s having played a significant role in that. We also know that the above has not been ability to move, to speak, to eat, to swallow and achieved – yet. ultimately to breath. It also takes people to fight it. It takes people to rally to the cause, to fundraise, to volunteer, to With the expertise of the best and brightest care and therefore to play a role in the overall researchers around the world supporting our fight against MND. We are privileged to have fundraising efforts, we are progressing towards ‘our’ people and we value them. our goal but we are not there yet. We must continue to fight the fight. We know you will I would like to thank the Board of Directors continue to support us, support those families of FightMND for their continued support living with MND and help those diagnosed in the and guidance and our hard-working team at future. FightMND. Strong governance is one of our key strategic pillars and our Foundation is fortunate We are in this together. to have an extremely invested and highly committed Board guiding us into the future. Regards, I acknowledge and thank the staff of FightMND who commit tireless and valuable hours to deliver the many facets of our operations, from fundraising to communications to finance and Jamie Howden research. I thank you for the work you all do CEO to ensure FightMND remains a leader in MND fundraising and research with the ultimate goal of living in a world without MND. 7 REMEMBERING DR. IAN DAVIS. ON NOVEMBER 1, 2018, FIGHTMND Over time, Ian’s MND progressed to a point Ian has left several indelible legacies, but two CO-FOUNDER DR. IAN DAVIS LOST HIS where he was unable to come into the office very stand out above all others. The establishment of COURAGEOUS BATTLE WITH MOTOR much. We would chat over skype or over email, the Foundation and his family, beautiful wife Mel NEURONE DISEASE. FIGHTMND so it was a little challenging in the beginning. and adorable son Archie. RESEARCH DIRECTOR, DR. BEC Then we were in constant communication all day everyday it seemed about what we were going to We could just be a fundraising organisation, but SHEEAN SHARES HER MEMORIES OF work towards but we were always making sure we are so much more than that and are now WORKING WITH IAN, HIS IMPACT ON we were having a lot of fun at the same time.