A belated report

Last year’s major fundraiser was held at the Telethon Kids Institute on the evening of 26 September 2014. Thanks to our supporters, it was another great success, raising over $20,000.00 for the Ethan Davies Scholarship for Brain Cancer Research.

Highlights of the night included a presentation from the inaugural recipient of Ethan’s Scholarship, Dr Sasha Rogers, and tours of the brain tumour laboratories hosted by members of the Telethon Kids brain tumour research team.

Below you’ll find part of the welcoming address that Christie-Lee and I gave on the night, together with some photos that have kindly been provided by Telethon Kids.

Shannon: Thank you so much for joining us on this special evening. Another year has gone by and we are thrilled to be able to take this opportunity to give you an update on where things are at with Ethan’s progress and the Ethan Davies Scholarship for Brain Cancer Research.

When we launched the Scholarship back in 2012, Ethan had only just turned 2 and had just finished his treatment. He was very sick and was about to embark on some arduous therapy to try and put his battered body and mind back together again.

As many of you have witnessed, Ethan has worked very hard over the last 2 years. He is a magical work in progress as we watch his brain and body heal and transform. Every day he learns something new, takes a tiny step in the right direction. With his trademark crooked smile and Boris tucked under one arm, Ethan is growing into a young man.

Christie-Lee: As we rejoice in Ethan’s progress, so too we face the harsh reality of his survival. It is a cruel irony that with every clear scan, so the threat of the cancer returning remains. There doesn’t seem to be much rhyme or reason as to why some are taken and others spared.

Through it all, the Scholarship offers us hope. Hope that we can find those answers, hope that the treatments won’t be so deadly, and hope that maybe our little boy will be one of the lucky ones because we have come together as a community and taken positive action to make it happen.

Above all else – tonight is a celebration. The Scholarship has raised over $300,000 in two years. Funds that will actually pay for the research that Ethan needs to be done. Each and every one of you has played a part in achieving this amazing result so far, and we want to thank you so much. We urge you to enjoy yourself tonight knowing that you personally have done something very valuable for your community.

We would like to make special mention of our major partners: the Telethon Kids Institute, Harcourts Central, Riverstone Custom Homes, Thinking Hats, Solomon Brothers and Bouncing Orange. The success of the Scholarship depends upon the support of our partners and we cannot thank you enough for your generous contributions.

We are very grateful to everyone at Telethon Kids for their help in getting the event together. A big thankyou also to Stuart Burling of Ron Farris Real Estate for stepping in as our auctioneer at short notice, and to our many auction and raffle item donors: Steve Morton, Emelie Coffey, Maureen Taylor, Be Beau, Blue Sky Media, Kieran Longbottom, Envy Jewellery, Joe and Grace Ricciardo, the Australian Swim Team, Dale and Debbie Putland, Jason Cunningham, Perth Heat, Anthony and Lisa Lees, Ross Taylor, The Bling Garage, Clint Baker Photography, The Gate Bar and Bistro, Travel Associates Australia, Cute n Cheap Clothing, Glow Wiks Candles, Pharmacy 777 Langford, Dorothy Farrington, Getaway Outdoors Kelmscott, Crown Perth, Cockburn Ice Arena, Lorraine Lea, Methven and Alexandra Nullmeyers.

Who got the chocolates?

Our 2014 HBF Run for Reason campaign was a huge success!

At the time of writing, our team has raised a whopping $10,334.70 for childhood brain cancer research at the Telethon Kids Institute through Ethan’s Scholarship. It’s not too late to donate, so if you’d like to get on a good thing, you can still do so via this link.

Thanks again to all of our team members, and to everyone who donated. We’ve more than doubled the money we raised in last year’s run.

As for our M&M dispenser challenge…drum roll please…the winner is…Rachel! A particularly aggressive social media campaign saw Rachel extort raise a hefty $330.16 in the last few days leading up to the run.

We’ve uploaded a bunch of photographs from the day on our Facebook page.

Finally, we’ve already been asked whether we’ll be fielding a team in this year’s Chevron City to Surf for Activ. The answer is yes! We’ll let you know once we’ve entered a team and set up a fundraising page.

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Counting down

There are now only a handful of days left before this Sunday’s HBF Run for a Reason!

Thanks again to all of our team members for their fantastic efforts to date. At the time of writing, we’re only about $100 short our (revised) team fundraising target of $7,500!

It would be great to finish in the top 10 teams by total funds raised (we’re currently sitting about $200 outside of tenth place). So…as an added incentive to all of our team members this week (and as a small reward for a big work-out), we’ll be giving away to the person who raises the most money between now and midnight on Sunday this cool little dispenser packed with 550 grams of M&Ms!

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Thanks to our supporters at Promotional FX for donating the dispenser!

It’s still not too late to join our team (instructions here), donate to the team, or donate to one of our individual team members – any contribution is welcome.

Super E caps now on sale

Due to popular demand, we are now selling the special “Super E” caps which were produced for those who volunteered at our recent Ependymoma Awareness Day event!

We are selling the caps at a price of $25.00 each plus postage (if applicable) and handling. The net proceeds of each sale will go towards Ethan’s Scholarship.

The caps are being supplied by our good friends at Promotional FX. These are brushed heavy cotton caps (in cyan colour only), with the Super Ethan logo embroidered above the peak, and the website address for Ethan’s Scholarship embroidered at the back.

CapsWe have 50 caps due in the next couple of weeks, and we are taking orders now!

To secure your cap, please follow this link. Any questions, please let me know!

Awareness plus action

Our Ependymoma Awareness Day event was a fantastic success!

On the morning of the event, our supporters were out in force on the streets of Perth shaking donation tins for Ethan’s Scholarship and handing out stickers and flyers.

Later in the day, supporters of the Scholarship joined the CBD lunch crowd in Forrest Place to hear presentations by Professor Jonathan Carapetis (Director, Telethon Kids Institute), me, the Right Honourable Lord Mayor Lisa Scaffidi and Laurence Goodman (Director, Harcourts Central), which were followed by a mass butterfly release. We arranged a face painter to paint butterflies for children in return for a gold coin donation, and special butterfly balloons were handed out. We also had a number of people volunteer their time to shake tins in and around Forrest Place while the presentations were on.

During his presentation, Laurence handed over a cheque for $10,000 for Ethan’s Scholarship. All in all, we raised over $12,000 on the day for childhood brain cancer research: awareness plus action.

It took an incredible amount of work to put the event together, and I’d like to thank everyone who contributed towards making it a success: particularly Sam Hooper at Telethon Kids, Casey Brooks at Harcourts Central, Laurence for his generosity in having Harcourts Central cover the event costs (over and above the firm’s $10,000 donation), Sean Wright at QuickColourPrint Gosnells for printing flyers, and Jonathan and the Lord Mayor for making time in their busy schedules to speak at the event.

For those who missed the event, I’ve pasted a copy of my speech below, as well as a photo gallery.

Thank you to everyone for sharing this special event with us.

I’d like to start by acknowledging the Right Honourable Lord Mayor of the City of Perth, Lisa-M Scaffidi, the Director of the Telethon Kids Institute, Professor Jonathan Carapetis, and Laurence Goodman, Director of Harcourts Central.  Harcourts Central is our newest partner, and the major sponsor of today’s event.  Finally, I’d like to acknowledge the supporters of the Ethan Davies Scholarship, including the many people who have volunteered their time to put this event together, particularly Samantha Hooper of the Telethon Kids Institute and Casey Brooks of Harcourts Central.  Earlier this morning we had a number of volunteers shaking donation tins around the Perth CBD, and you may have noticed we have more volunteer tin shakers roaming in and around Forrest Place right now.

Ladies and gentlemen, it has been said that something as small as the flutter of a butterfly’s wing can ultimately cause a typhoon halfway around the world.  If that is true, then the two hundred or so butterflies which we will release in just a little while might just, with your support, make the difference in the fight against childhood brain cancer.

Today coincides with Ependymoma Awareness Day, a day which was first established in the United States by the CERN Foundation three years ago.  Ependymoma, which also affects adults, is the third-most common type of brain cancer in children.  It is also the cancer which has touched my family.

Today we join doctors, scientists, patients and caregivers holding their own events all around the world, many of them including butterfly releases, in raising awareness of ependymoma  Today’s event has a specific focus on the childhood form of ependymoma.  However, I would like to take this opportunity to specifically acknowledge the many other forms of childhood brain cancer, and the amazing children who battle against this disease.  Not every type of cancer has its own awareness day.  But I hope that events like this can act as a springboard for awareness and action for all childhood brain cancers.

There are two components to what we are trying to achieve here today.

The first is to raise awareness of childhood brain cancer, particularly childhood ependymoma.  I want to emphasise this point: childhood brain cancer is statistically the greatest non-accidental killer of children in Australia.  It is worth pausing to think about what that means.  For those of you who are parents, it means that, barring accident, the most likely life-threatening risk to your child is brain cancer.  That is a fact which isn’t well known.  It should be well known.  If you didn’t know it before, now you do.

The second thing we want to do is to challenge you to do something about childhood brain cancer, particularly by supporting the Ethan Davies Scholarship.  A disease which deserves the title of “greatest non-accidental killer of children” also deserves urgent and commensurate action through medical research.  That research is hampered by a lack of funding, which in part stems from a lack of awareness.  The lack of funding is reflected by the fact that survival rates for childhood brain cancer have, in the last decade, reached a plateau well below that of other childhood cancers, such as leukaemia.

The Ethan Davies Scholarship, which I’m asking you to support, is named after my only son.  Ethan will turn four in a week or so, but he was only 20 months old when he was diagnosed with ependymoma.

It is hard for me to convey exactly how devastating this diagnosis was for me, my wife Christie-Lee and our families.  The survival rate statistics for childhood brain cancer are confronting, especially when the cancer recurs, as it sadly often does.  Add to that the fact that “survival” for statistical purposes often just means making it five years after diagnosis.  Personally, reconciling myself to the idea that my son has brain cancer, and to the possibility that he may very well die from this disease, is a difficult and ongoing process.  I find it hard to imagine living in a world without Ethan’s cheeky smiles and laughter, his generosity of spirit, his little hand taking mine when I come home at the end of each day – and his hugs (he gives the best hugs) – but I know that this is an outcome which is very much on the board.  If Ethan is lost to this world, the world will be poorer for it.

I want you to know some things about Ethan.

I want you to know that he loves the Wiggles, Play School, and Toy Story.  He loves swimming and dancing.  He insists on being read books before he goes to bed every night.  He goes to Play Group and swimming lessons, and my wife and I are delighted and proud of the fact that he has started kindy this year.  The reason you need to know this is because Ethan could very well be your own son, or brother, or friend.  You don’t get a warning when it comes to childhood brain cancer.  The causes are still unclear.  Ethan has no family history of brain cancer, and none of the known risk factors applied to him.  Ethan’s arrival was planned with meticulous detail: my wife read all of the pregnancy books and took all the supplements.  I never thought that the kid with cancer on the news would be my kid.

I want you to know that Ethan endured six surgeries at Princess Margaret Hospital before the age of two, including a nine-hour operation to remove a tumour the size of a human fist.  He spent about three months straight in hospital, much of that time immobilised in a cot.  His surgeries were followed by seven weeks of chemotherapy, and then 33 consecutive week days of radiation therapy in Melbourne, receiving each dose of radiation under general anaesthetic.  X-rays, CT scans, MRI scans, blood tests, urine tests, lumbar punctures, an ever-changing cocktail of drugs: all of these things became routine parts of Ethan’s life.  All in all, he lost about a year of his life in and out of hospitals.  That is a lot for a two-year-old.

I want you to know that Ethan has had to learn to sit, crawl and walk twice over.  He is only just learning to eat again and still receives much of his nutrition through a nasogastric tube.  He has a palsy down the left side of his face, and a programmable shunt implanted in his skull.  I don’t generally think long-term, but the long-term consequences of the exposure of Ethan’s developing brain to radiation may include significant cognitive deficits and issues relating to hormone regulation.  For now, Ethan has an MRI scan every few months to look for recurrences of his tumour, and my wife and I attempt to carve out some form of normalcy in the small, claustrophobic spaces between each scan.

I want you to know all of these things about Ethan so that you understand that childhood brain cancer can touch anyone, and so that you have some sense of the magnitude of the challenges kids with brain cancer face, in both the short and long term.  Again, we are talking about the greatest non-accidental killer of children in Australia.

We can all do something about childhood brain cancer.  And whatever we do, no matter how small the action, has the potential to make a difference.  When Ethan was diagnosed, my wife and I were motivated by a sense of powerlessness to ask Ethan’s doctors, “what do you need, and what can we do?”  Their answer led to the establishment of the Ethan Davies Scholarship for Brain Cancer Research.

The Ethan Davies Scholarship is an annual scholarship established by my wife and I in partnership with the Telethon Kids Institute, which supports the work of a researcher in the Institute’s existing brain tumour laboratory team, with a particular focus on ependymoma.  Each Scholarship recipient is selected by Dr Nick Gottardo, a paediatric neuro-oncologist at Princess Margaret Hospital who is also Head of Brain Tumour Research at the Telethon Kids Institute, and Dr Sharon Lee, a consultant paediatric neurosurgeon at Princess Margaret who oversaw much of Ethan’s care.  One of the aims of the Scholarship is to bridge the divide between surgical and physicianly perspectives.  In this regard, each Scholarship recipient will combine laboratory research at the Telethon Kids Institute with neurosurgery training, and will be guided by both Dr Gottardo and Dr Lee.

I am pleased to announce that the first recipient of the Scholarship, Dr Sasha Rogers, recently relocated from Townsville to begin his work in February this year.  It is my hope that Dr Rogers’ work will make a real difference in combination with the Telethon Kids Institute’s existing childhood brain cancer research teams, in their efforts to accelerate the development and introduction of new and improved ways to prevent and better treat this devastating cause of illness in children.

Awareness without action is not enough.  Earlier, I challenged you to do something about childhood brain cancer by supporting Ethan’s Scholarship.  I want you to ask yourselves the same question that my wife and I asked our doctors when Ethan was diagnosed: “what can we do”?  You can do many things.

You can spread the word about Ethan and his Scholarship.  You can make a donation to one of our volunteer tin shakers roaming around Forrest Place right now.  You can make an online donation, or set up an ongoing donation, via the website for Ethan’s Scholarship – www.ethandaviesscholarship.com.au.  You can host a donation tin or fundraising event in your workplace, or fundraise with a fun run – you can join our team in this year’s HBF Run for a Reason, which has already raised close to $6,000.  Or, like Harcourts Central, you could decide to make a substantial contribution to childhood brain cancer research by becoming one of our corporate partners.  You can find information on how to do all of these things on the Scholarship website.  If something as small as the flutter of a butterfly’s wing can cause a typhoon halfway around the world, then no contribution is too small to make a difference.

Thank you.

Upping the ante

Ladies and gentlemen, we came in like the proverbial wrecking ball…and smashed our team fundraising goal for this year’s HBF Run for Reason campaign!

A massive Super Ethan high five goes out to our current team members: Jasmine, Julianne, Matthew, Alex, Kate, Ben, Rachel, Ruth, Jade, Justin, Laura, Maureen, Tanya, Beth, Jon, Tracey, Alan and Blake.

Since the run is still basically two months away, I’ve upped the ante and increased our team fundraising goal to $7,500. Based on current form, it’ll be a snap!

You can help our team members meet their individual fundraising goals, or exceed them, by clicking on their names above and donating online. Alternatively, there is still plenty of time to sign up and run with us. We’re tackling the greatest non-accidental killer of children in Australia, people: I promise that your money won’t go to waste.

Currently sitting in third spot overall in funds raised by team, and eyeing off second spot!

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Call for more tin shakers!

We’re still looking for people to donate an hour or two of their time on Thursday, 10 April 2014 to shake tins around the Perth CBD, as part of our Ependymoma Awareness Day event!

If you’d like to get involved, we have two “shifts” planned, as follows:

7:30am to 8:30am (for the morning work rush)
1:00pm to 2:00pm (to coincide with the main event)

You can volunteer for one shift, or both. For the first shift, we’ll need people at strategic locations around the CBD (e.g. train station exits, malls, major intersections). Second-shift tin shakers just need to patrol in the vicinity of Forrest Place while the presentations are on.

To put your hand up, please email me via shannon@ethandaviesscholarship.com.au.

Because we need to prepare and distribute official lanyards, donation tins, etc (and generally coordinate the event) well ahead of time, it would be great if volunteers could get in touch with me by the end of this month.

Thanks to those who have already volunteered!

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HBF Run for a Reason update

Super proud of the fundraising efforts of the Ethan Davies Scholarship for Brain Cancer Research team to date: at the time of writing, we’ve managed to raise $4,029.75! This places us fourth in total funds raised by teams.

A special mention to Jasmine, Matthew, Alex, Ben, Rachel, Ruth, Jade and Justin, who have each exceeded their $250 commitments. Great job, guys!

We’re still looking for six more team members, so if you’re keen to sign up for a lazy 4 or 12 kms, please follow this link for instructions. Alternatively, if you’d like to donate to the team, our fundraising page can be accessed here.

The run is only two months away!

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Telethon Kids Institute

For those who don’t know, as of yesterday the Telethon Institute for Child Health Research officially became known as the Telethon Kids Institute.

Below is the Institute’s snazzy new logo: we like very much. (Also, “Ethan Davies Scholarship for Brain Cancer Research” and “Telethon Institute for Child Health Research” can be a real mouthful in the same sentence.)

TKI logo

We were honoured that our whole family was invited to the official launch of the new brand at the Institute yesterday evening. Ethan had a fantastic time in the “Kids’ Zone”, running laps around the activity area, stealing food and balloons, and generally creating a mess. The girls hung around with the adults, and squawked during the official presentations.

Thanks to everyone at the Institute who was involved in putting together the event (and apologies to those who had to clean up after Ethan).

Being Ethan

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Ethan ate most of a paddle pop today!

A small achievement to most but in Ethan’s world, a big step.

Ethan has been having a tough time lately. Kindy has been a big transition. It’s definitely the best form of therapy for him and incredibly beneficial in so many ways…but that doesn’t make it easy on him!

Ethan has now been formally diagnosed with autism (or in correct terms, Autism Spectrum Disorder). This diagnosis is not related to the brain cancer. Although to those of us who know Ethan well, it is no real surprise as he exhibited autistic tendencies even before his tumour was detected.

I wanted to let you all know about Ethan’s autism diagnosis because it is a part of Ethan and explains much of his anxiety and confusing behaviour in social settings. It is very difficult for Ethan to face the world – and for an autistic child to have also suffered the trauma of childhood brain cancer is unimaginable. Ethan has been forcibly subjected to treatments that we, as adults, struggle to contend with but always with the sole objective of doing what we needed to do to give him the best shot at life.

I can’t begin to imagine how Ethan must view his world in light of everything he has been through. But I do know that he needs endless love, support and compassion as he continues his kindy journey and begins some additional therapy to address his autism.

Thank you to everyone who has supported Ethan to date and to those who go to extra special lengths to make sure Ethan is included, even on his bad days. We really do appreciate it.

We take each day as it comes and we hope that for every day Ethan is cancer free, we can help him in the best way we can to live life to the fullest, however that may be 🙂