Our 1st year in review
From Liz Dawes, Executive Director.
This week marks our first anniversary of the Robert Connor Dawes (RCD) Fund. We became an established Australian charity on 31 July, 2013.
We have much to be proud of and I’d say celebrate but that word doesn’t seem quite right. The only reason we exist is because the horrific disease that is brain cancer stole the promising young life of our beloved 18-year-old son, brother & friend, Connor.
We’ve taken his devastating loss and within months created what we hope will be a lasting legacy in Connor’s name. Our goal is to raise important and much needed funds and awareness to aid in brain cancer research and clinical trials while providing important at home support, including music therapy. His strong & wise spirit will live on.
“Brain Matters”. A notebook that encapsulates our philosophy and inspiration
In our inaugural year we have raised over $250,000, primarily from registrations and donations from Connor’s Run. In our first Connor’s Run we had over 2000 participants and raised over $100,000, in just months after Connor’s passing. It was a celebration of Connor’s life and the coming together of a community determined to make a difference but in a positive, healthy way. This year’s run, scheduled for 14 September sold out at 2000 participants in just over 2 months. Bayside City Council awarded ‘Connor’s Run’ as the 2013 Bayside “Community Event of the Year”.
The very busy Finish Line at the 2013 Connor’s Run
We also held a very successful Christmas Market, held at our home, in early December, selling homemade goodies, Christmas decorations and outdoor plants. The Market culminated with our Christmas Party, the highlight being entertained by extremely talented young musicians, most with close ties to Connor. We raised over $35,000 in just 3 days.
Nothing happens without the generous support of volunteers / Christmas elves
In late April we supported Australian’s ‘Brain Cancer Awareness Week’ by focusing on the youth. Our aim was to create awareness around “their’ cancer. Brain cancer is the number 1 cancer killer of children in Australia, while encouraging positive brain activities. 16 schools participated and over $25,000 was raised. We created the slogan “The brain is where the heart lives” and engaged over 15,000 students, selling wristbands, badges, ribbons & books.
Brain Week was about spreading the message that #BrainsMatter
The last 12 months we have been “researching the research”. We have visited with the key brain cancer researchers, neuro oncologists, radiologists and surgeons in Melbourne, Sydney and Perth. We have investigated adult research and pediatric research trying to understand what is being done and where our fundraising dollars can make a real impact. We have worked to find and link together other Australian brain cancer charities, hoping that by aligning ourselves together as an industry with common goals and understood strategies we can make a greater impact.
One of many meetings investigating the fascinating and complicated world of brain tumour research.
One year on and we have a Robert Connor Dawes PhD scholarship under the direction of the BCDC (Brain Cancer Discovery Collaborative). We have given $25,000 to Sydney Children’s for an innovative ‘personalised’ brain tumour program. We are working closely with the Royal Children’s in Melbourne about partnering on an important position to drive their neuro-oncology work. We are also supporting programs at Peter Mac & Royal Melbourne, both hospitals in which Connor was treated. In addition, we have funded at home Music Therapy by trained therapists for nearly 10 young patients across Australia.
Yoga and music therapy help the heart sing so the mind can heal
In addition to creating the RCD Fund in Australia we have also established the RCD Fund in the United States. Connor was born in the USA (Milwaukee, Wisconsin) in June, 1994. He kept close ties with his family and was a passionate follower of Wisconsin sports, US politics and the US cultural entertainment “scene”. It makes sense and feels good creating a lasting legacy for him in the US as well as in Australia.
All money raised in the United States will stay in the US and initially aid key research being done on ependymomas (the type of tumour Connor had). We have formed a close relationship with CERN (Collaborative Ependymoma Research Network) based at MD Anderson in Houston, Texas and their pediatric counterpart at St Jude’s in Memphis, Tennessee. They are the global leaders in ependymoma research & support. Our hope is to raise enough money to fund a PhD/Fellow position for 3 years. We will also work, where possible, on aligning Australia hospitals to the CERN network.
Shadow Runs, like this one in Texas, are just one example of International RCD brains at work
All of the amazing progress we have made in just one year simply could not have happened without the tireless work and dedication of our volunteers. We are a unique charity in that we are 100% volunteer driven & led. We are fortunate to have a battalion of talented, passionate individuals that are extremely generous with their time & talent. Scott and I are humbled by and so appreciative of this selfless commitment.
The research community all agree that exciting breakthroughs are happening. Progress with immunotherapy treatments and new understandings in DNA/molecular science have given scientists real hope for the first time. Now the challenge will be to take these new findings, expand upon them and transition them to meaningful new treatments. Transitioning these findings to successful treatment for patients will take time and a lot of money, much of which will need to come from public funding.
Part of the RCD team at the Australia Day Award ceremony where Connor’s Run won Bayside Community Event of the Year
In the last few weeks we gained DGR 2 status in Australia. This means that every donation we receive is 100% tax deductible. We have filed for a similar status, 501c3 in the US. Our application status allows for all US donations to be currently 100% tax deductible. We hope these new tax statuses will encourage more giving with the knowledge that every dollar donated to the RCD Fund will be directed to our projects with virtually zero over-head.
Connor’s quirky, gifted brain defined him, that it became his Achilles Heel seems a cruel twist of fate. No one should have to endure what he did and then be told, “I’m sorry, there is nothing more we can do”. Each year thousands of children around the world will be diagnosed with a brain tumour and 25% will not survive. This statistic hasn’t changed in over 30 years. The RCD Fund, with your support, is determined to change these odds. Then the word ‘celebrate’ will be perfectly fitting.
Aeternum Fortis,
Liz