It’s our 2 Year Anniversary… let’s celebrate with a new name!

Two years ago today (31 July, 2013) the Robert Connor Dawes Fund was officially established in Australia by the ‘Charities and Not for Profit Commission’. I had no idea then what that would mean or become, I just knew it felt like the absolutely right thing to do. It felt then and still does today like a positive salve on the never healing wound of Connor’s loss.

I loved seeing Connor’s name on formal Australian government letterhead…his spirit radiating off the shiny gloss paper the formal certificate arrived on. A year later we became a DGR2 charity in Australia, meaning all donations to us could be tax deductible. In between, we set up the the Robert Connor Dawes Fund as a 501c3 (similar to DGR) in the US. Now today, we are announcing we’ve changed our name, replacing Fund with Foundation (in both the US & Australia) which we feel better reflects who we really are. A Foundation, at least to me, beyond being the basis for something is a charity that works towards the good of something, relying on the public to help that happen…a Fund always sounded like we weren’t quite a Foundation or that we already had a ‘fund’ of which to draw resources from…which was certainly not the case.

It seems nice announcing this on our two year anniversary. The Robert Connor Dawes Foundation. Sounds good. I’m also putting an emphasis on encouraging those involved to refer to us by our whole name. I like RCD and especially as it relates so cleverly to our areas of funding: Research, Care & Development but I am mindful we don’t want to become an acronym’ed company like CNN or IBM and lose Connor’s identity in his intitals. So we evolve and grow and it feels natural that we bend and adjust as we go along.

As I said, I had no real idea of what we were starting 2 years ago. We had the idea of Connor’s Run (thanks to Connor actually having done it himself and Nick, his brother, suggesting it would be a fun event to hold) In our first year we had a goal of 500 people and $25,000 raised…we worried that was too optimistic. I gathered a committee of ‘do’ers” and we basically figured it all out as we went along. The stars seemed to align and keep aligning. The 3 Councils (Bayside, City of Pt Phillip and City of Melbourne) have been so supportive…and are now nominating and bestowing awards on Connor’s Run. David Hansen, with SuperSprint, has selflessly mentored and guided us through the process. Our small (but strong & efficient) original committee is back for its third year in its entirety and our level of 2500 participants (selling out in 4 weeks) and $350,000 goal (yikes) feels honestly, unbelievable.

After raising $100,000 at our 1st Connor’s Run in Sept 2103 I met with Celia Williams, a friend who offered to help me sort out the brain cancer research side of things. We knew nothing…except for the very powerful knowledge that brain cancer is cruel and there are not enough effective treatments after surgery. Wow, we have certainly learned a lot and I’m grateful Celia is still so passionate in her support. Scott’s sister, Deb Clark, in Houston, Texas, also lends her considerable research talent to our US efforts. Just this week, we haven given money to support a paediatric/young adult ependymoma (the type of tumour Connor had) conference in Toronto, a gathering of the top global researchers in this field. We know that Michael Taylor, from Sick Kids in Toronto is a leader in paediatric brain cancer research. We are also supporting Royal Children’s Hospital’s ( in Melbourne) collaborative efforts with his lab. I’ve also been in discussions with Richard Gilbertson, another pre-eminient researcher in this field. Richard has recently left St Judes in Memphis, Tn (he was Executive Vice President and Head of Oncology) to become the Head of Oncology at Cambridge University in the UK. I’m certain that if new effective treatments are discovered which result in clinical trials they will be driven from these two men’s labs. They both know we are 100% committed to helping support their efforts in any meaningful ways we can, including supporting Australia & US researchers to link into their efforts.

Marek Wolski, in charge of our marketing, really deserves so much of the credit for all we have accomplished. He makes everything we ‘are’ (our brand, website, logo, marketing campaigns, etc) look polished, professional and most importantly fresh and modern. He works hard to keep me and all involved focused and efficient. I’m not sure many people understand the enormity & the selflessness of the work he does…all from Sweden (where he lives, with his lovely fiancé’ Charlotte & works (he has a ‘real’ job )), 100% pro bono. Who knew when he began babysitting our three young children in 2000, when he was just 14, where that would lead?! He is solid gold.

I love ideas…I really do… especially as they relate to Connor. It’s been such fun incorporating Connor’s interests into so much of what we are doing: BrainWeek (he was a quirky intellectual), Rowing (we have Stanford and Wisconsin doing a “Connor’s Ergo Challenge’ in October: a 100km virtual ergo between their crews), Felik’s Zemdegs, Rubik’s World Champion, Connor’s Run and now global Shadow Runs. Ideas energise and motivate me…I literally dream of things we can do, should be doing. Marek tells me most companies biggest challenge is new ideas…we are the opposite. So many ideas, so little time! I feed off of other peoples ideas. Wasn’t Carrie Bickmore’s “Beanies for Brain Cancer” just fantastic? This past year people have started coming to us with their ideas of ways to help…I LOVE this too! The SMJFL partnership, Hampton Rotary’s “Glow for Good”, Dan Canta’s English Channel Swim, schools across Melbourne holding various fundraisers to support us. So many young people reaching out, getting involved, volunteering…it is honestly the best balm on my grieving wound and a real silver lining.

Sadly, the reality of having a brain cancer charity means you’ll come across others dealing with this disease. It is after all, the #1 cancer killer in children and young people in Australia. Pippa, our absolutely gorgeous first Music & Yoga Therapy recipient lost her life a few months ago. So many from her community in Warnambool and Melbourne have done their own fundraisers in support & memory of Pippa, including Hayley, a young woman dealing with her own brain cancer. A group of positive young woman held “Teddy Bear’s Picnic’ for their friend Tristan. We are humbled that people are reaching out to us as their charity to support with these events.

Two years on and I’m grateful for our Board of Directors: Scott, Marek, Jane Abbott, Derek Mortimer (the lawyer that helped set up our charity) and Janet Latchford. Janet, in particular, has been exceedingly good at helping us structure our company around solid corporate governance and financial responsibility. Janet is the current Deputy Chancellor at RMIT and recent past President of Epworth Hospital and has generously donated her considerable talent, experience and knowledge to our charity. As we continue to grow and expand its imperative we have the right structure and policies in place. It gives me peace of mind knowing we are running our charity responsibly.

I am indebted to our Ambassadors: James Tomkins, Olivia Wells, Tamsyn Lewis and Lisa McCune for coming on board and lending their time and talent to our cause. We’ve recently added Sam Wood, Australia’s latest Bachelor, to our list of supporters. And Shane Warne’s children have ensured he stays involved…mainly because they want him too.

So here we are…sooo many wonderful friends of mine, of Connor’s, Scott’s, of Nick & Hannah’s lending their time and heart…it is a true community effort. It feels real, it feels genuine, it feels like we have started something truly worthwhile. It feels like Connor is here, his spirit so strong I can feel it burning inside me (with lights flickering around me!), defying the Gods that took him too soon. I’m glad I’m not tired and ready to move on…this still feels new, with so much ahead (yes, more ideas!). It feels like this is exactly where I should be and glad that what I’m doing feels uncannily natural.

Thank you to each of you and the role you’ve played (if you are reading this than undoubtably you’ve be involved along the way!). You’ve been amazing!

Aeternum Fortis,

Liz Dawes, Executive Director