ANNUAL REPORT It ends with a cure.

Transcription

1 ANNUAL REPORT It ends with a cure.

2 year It has been a busy time since we publicly launched the EB Research Foundation in April We are very proud of the achievements of our volunteers and supporters over that time and look forward to the next 12 months of the journey. Tilly Wilkes 20 x Larger Already Aus. largest investor in EB research 3,000 + attendees at our charity events $1,000,000 on target in our first 12 months ANNUAL REPORT 3 The New EB Research Foundation Recent scientific advances mean it is not a matter of if but when. With the right funding, scientific minds and research resources focused on the task we will unlock the genetic code and bring an end to the worst disease you have never heard of.. An individual with EB lacks a critical functioning protein that binds the layers of skin together. Without this protein, the skin tears apart, blisters and sheers off, leading to severe pain, disfigurement, and constant gaping open wounds. EB affects the body inside and out. Blisters occur all over the body, as well as in the eyes, mouth, esophagus, and other internal organs. Living with EB is like living with third degree burns and too often results in an early death. use of time and resources and reduce duplication of efforts. We run a zero-cost efficiency model for our events that ensures that 100% of the donations made directly to the EB Research Foundation are dedicated to funding critical research not administration or disease, Epidermolysis Bullosa (EB), the worst disease you have never heard of. In support of the National Nurse and Family Support Programs dedicated to assisting EB suffers, Tilly s family and friends started to raise funds and awareness for the cause. After raising more than A new charitable foundation that is unashamedly single-mindedly The EB Research Foundation provides global experience and a new way of thinking to the non-profit model. We aim to utilise an independent advisory board of international experts to identify and assess research investment opportunities that are most likely to end with a cure. We rely on an open-collaborative information sharing approach with our international colleagues to ensure efficient other costs. We utilise an entrepreneurial model, called enterprise philanthropy, to ensure the success we have from our research generates additional funds that can be directed back into further research. It s a new way of thinking, designed to ensure your donated dollar goes further and ends the pain faster. The Team behind the EB Research Foundation have been inspired by a little girl named Tilly born in Tilly was diagnosed with the rare genetic skin $1.5m to support families and suffers the decision was made to commence the next phase of our journey and create Australia s EB Research Foundation. A new charitable organisation unashamedly single-mindedly focused on finding a cure for EB. Other organisations continue to provide great care and support for sufferers and families living with EB. But our focus is to bring it all to an end... it ends with a cure.

3 4 EB RESEARCH FOUNDATION ANNUAL REPORT 5 An Amazing Kick-off MEET SOME OF OUR KEY PEOPLE This first 8 months have been busy yet incredibly exciting for the EB Research Foundation and I am extremely proud of what we have already achieved over this short time. Since our registration as a not-for-profit charity in October 2016 and our public launch at The CottonBall in April 2017 we have come a long way. Scott Didier AM Chairman Corey Wilkes Director In June we were excited to announce our very first ambassador, AFL champion and Nova FM breakfast radio host Jonathan Brown. Browny is fantastic and he has a personal connection, making our partnership a perfect fit. Jonathan Brown s family friends, both mother and son live with EB. We are absolutely thrilled to have him onboard supporting the EB Research Foundation. This first 8-month period has been focused on establishing structure, policies and procedures, establishiing international relationships whilst continuously fundraising and focusing on key supporters. Since our registration in late October 2016, the EB Research Foundation raised has $559,989.. We would sincerely like to thank the businesses and individuals who contributed so generously, making our kick-off so successful. This includes our wonderful corporate partners, donors, our passionate supporters who have held third party fundraising events for the EB Research Foundation and our amazing volunteers. Your generosity fuels our success and strengthens our determination and we are honoured to have your support on this crucial journey of healing Epidermolysis Bullosa. I would also like to thank my passionate fellow Board members for their dedication and commitment. CEO of the Johns Lyng Group of companies. Scott has raised millions in support of seriously ill children. Mark Walkley Director Mark is an entrepreneur with significant experience in building commercial success stories & a committed philanthropist. Donna Whi n Director/Nat. Co-ordinator Corey s daughter Tilly was born with EB in 2011 and is the inspiration behind the EB Research Foundation. Erica Lord Director Erica is a Director and EA at Johns Lyng Group. She brings a wealth of international experience at the corporate Board level. John Bacon Director Since our establishment, our team has been working tirelessly on collaborating with the EB experts around the globe with a focus on Australia, USA and Europe. Our work has identified a number of exciting research investment opportunities that we look forward to sharing with you over the next 12 months. EB is truly the worst disease you have never heard of. We hope that you will stay with us on this exciting journey to find a cure for Epidermolysis Bullosa. National Coordinator & responsible for the management, implementation and execution of business objectives Ash Thompson Director Ashley runs a successful Melbourne based town-planning consultancy and has a lifelong connection to Corey and his family. A past chair of Debra Australia and scientist with global experience in research & commercialisation of pharmaceuticals Anthony Brown Accountant Anthony a Partner at Abound Group who has extensive experience providing specialised tax and accounting advice. Scott Didier AM Chairman Jonathan Brown Ambassador JB and his family have been touched by EB and we are proud to have him on board to help raise awareness.

4 6 EB RESEARCH FOUNDATION ANNUAL REPORT 7 Governance & Finance Governance Finance Mark Walkley Corey Wilkes Anthony Brown Marketing & EB Community Marketing Ash Thompson EB Community Corey Wilkes Fantastic events that will continue to grow Board Fundraising & Events Fundraising Events Research Research International Expert Advisory Committee EB Research Foundation Structure An Exciting Journey We have taken the first steps, but there is a long way to go. Our mission is to expedite a cure for all forms of Epidermolysis Bullosa (EB)... because it ends with acure. EB Research Foundation hosts a range of fundraising events and activities from which the majority of our funds are received. The CottonBall, Tough Tilly Day, #CureEB Ladies Lunch, The Melbourne StarBall lead the way and provide the opportunity for fun-filled and informative exchanges with our supporters. We are extremely grateful for the large number of third party fundraisers that also raise significant funds annually including, Brighter Days Festival, The Ultimate Treadmill Challenge, Golf Days organised by Johns Lyng Group & CD Motor Group and many more. Over coming years we will continue to grow our events, improve their profitability and enhance the experience for our guests & supporters. We have been working hard to established important relationships with key stake holders in both the USA and Europe. A number of our directors have self-funded trips abroad to meet and discuss research and other opportunities with these organisations. In addition, we have coupled with an independent international committee of scientific experts, in the field of EB, that will assist us to assess research investment opportunities and ensure funds are only allocated to the most promising and cost-efficient projects. Investments in the World s best research Moving forward, we will seek to enhance our international relationships with the world s leading researchers, ensure that any investment will result in tangible and real results and utilise the expertise of the international panel of experts to identify and fund the most realistic opportunity for a cure. Our two primary aims during our initial months were: 1. To establish critical international relationships with the world s leading stake holders and develop a strong understanding of potential research investment opportunities; 2. Raise $1,000,000 in our first 12months of operation. Objective 1 was discussed above and after 8 months of operations we are on The reality is: money is what makes track to hit that $1,000,000 target. The more money we can raise the faster we can bring about a cure. We will continue to strive to increase our annual income and ensure it is used as efficiently and effectively as possible to bring about a cure to EB as soon as possible. Our venture philanthropy model ensures that our investments into research will provide as great a return as possible delivering more funds for more research. The international panel of scientific experts will ensure we only identify and Prudent use ensures biggest bang resource research that has the most realistic chance of making a significant difference to those living with EB. 100% of tax deductible donations made to the EB Research Foundation are dedicated to research, with our small administrative costs being sourced from elsewhere. All of this ensures that each donated dollar makes a real contribution to finding a cure sooner. We will continue to maintain our admin costs as low possible, ensure 100% of tax deductible donations are dedicated to research and ensure those funds are spent as effectively and effeciently as possible. The individuals and stories from our amazing community of EB suffers and families are truly awe inspiring. This coupled with the amazing generosity of supporters like you constantly humbles and motivates all associated with our Foundation. You are what drives us Over the next twelve months we will continue to develop new supporter programs and expand our communication channels to ensure you are regularly updated on our journey Those interested in our financial statements for the first 8months, up until June , can view the most relevant documents in the attachments to this report, including: Attachment A: FY Financial Statements. Audited by Pitcher Partners Should you have any queries regarding the information contained in this report please do not hesitate to contact our National Co-ordinator Donna Whiffin on We would love to hear from your or via our website at:

5 8 EB RESEARCH FOUNDATION ANNUAL REPORT 9 Get involved The EB Research Foundation does not receive any Government funding. We rely solely on the generosity of businesses and individuals. The EB Research Foundation is grateful for the support of those who s donation of services, goods and funds make the EB Research Foundation a reality. It is a constant source of motivation and we thoroughly enjoy partnering with our generous supporters.. HOW YOU CAN HELP Volunteer your time: If you would like to Volunteer your time, please our office admin@ebresearchfoundation.org Make a donation: If you would like to make a donation to help expedite a cure for Epidermolysis Bullosa visit You can become a regular donor or join our $1M Club Leave a bequest: By writing the EB Research Foundation into your Will, you will help us write an end to Epidermolysis Bullosa sooner, It ends with a cure! Please feel free to contact our office Sponsor an event or fundraising activity: If you would like to sponsor an event or fundraising activity, then we would love to hear from you. Become a corporate partner : We are constantly seeking Corporate Partners in various categories, including but not limited to Graphic Designers, Florists, Printers, Event Industry Partners, Raffle Partners, Table Partners, Auction Item Partners, and Beverage Partners. If you can offer a service to the EB Research Foundation, then we would love to hear from you. continueing the journey throughout Some of our amazing volunteers at the EB Research Foundation s launch. The Cottomn Ball 2017

6 EB Research Foundation Ltd Level 1, 27 Butler Way, Tullamarine Victoria Australia 3043 p: w: ebresearchfoundation.org e: facebook/ebresearchfoundation instagram/ebresearchfoundation Attachment A FY Financial Statements. Audited by Pitcher Partners

7 CORRECTION TO ANNUAL REPORT The EB Research Foundation today advise of a correction to its FY 2017 Annual Report. There was a typographical error in the table on page 51 of the Annual Report under the heading Meetings of Directors where the reference to the number of eligible meetings for John Bacon is one and should be five. This typographical error does not have any effect on any aspect of the financials in the Annual Report. A full copy of the revised Annual Report has been lodged with the ACNC. Donna Whiffin Company Secretary EB Research Foundation Ltd Level 1, 27 Butler Way Tullamarine Vic ABN:

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