2015/2016 Entertainment Books

We are selling Entertainment Book memberships again this year! 20% of the price of each Entertainment Book membership sold goes directly to Ethan’s Scholarship.

As with last year, memberships are available in two formats: printed book or digital. Below is a summary of both formats. Once you’ve made up your mind, follow this link to buy a membership and help raise funds for childhood brain cancer research.

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Book membership

Digital membership

  • The traditional Entertainment Book printed membership that comes with the gold card and vouchers.
  • Contains over $20,000 worth of valuable up to 50% off and 2-for-1 offers for many of the best restaurants, cafés, arts, attractions, hotels, travel, shopping and much more!
  • Show and save using your Apple or Android device, with no card or voucher to present
  • Search for nearby businesses in the Entertainment program
  • Search for specific businesses by name, location or dining category
  • Share your membership with another family member
BOOK MEMBERSHIP DIGITAL MEMBERSHIP
You like to plan ahead when dining out
You like to flick through the Book
You tend to make spontaneous dining decisions
You don’t have an Apple or Android smartphone
You never leave home without your iPhone or Android smartphone
You want to share your Entertainment offers with another family member
Keep track of your savings automatically

Note: the Entertainment app is compatible with Apple iPhone 4* and above running iOS 6.0 or later, and Android phones running 4.1.2 (Jelly Bean) or higher. To check if your phone is compatible, view a list of compatible mobile devices.

* The app is optimised for iPhone 5, and may run slowly on iPhone 4.

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.

“Let’s just get him to 5″

“Let’s just get him to 5.”

That was what Ethan’s doctor said, just after the hospital found his brain tumour. We were new to the world of childhood cancer, and we were asking questions like, “will the chemo/radiation affect Ethan’s ability to have children?” The answer we got was the doctor’s way of adjusting our expectations.

Last Saturday Ethan has exceeded those expectations: it was his 5th birthday. We are so proud of the obstacles he has overcome, and grateful to the many doctors, nurses, therapists, family members and friends who have got Ethan to this point.

If you would like to give Ethan a gift to mark his special day, please consider making a small donation on his behalf to the Scholarship. Just go to the website for Ethan’s Scholarship and click “donate now” in the top right-hand corner. Every little bit counts.

Happy 5th birthday Ethan!

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Off-treatment and being “well”

One of the things that people may not be aware of is just how much ongoing care a child with cancer requires, even when “well” and “off-treatment”. Ethan has complex, ongoing care coordinated through many departments at PMH.

Yesterday Ethan had an appointment in endocrinology, to assess his growth and hormone function. Unfortunately, the radiation that Ethan received to his brain may have damaged his pituitary gland, hypothalamus etc so routine surveillance is conducted to see how his hormone levels are. This means blood tests every 6 months. So far all his blood tests have been clear, and his growth has been good – although it may be starting to slow a bit now.

After his appointment with the endocrinologist, Ethan needed to have a blood test so off we went to get it done. He is such a superstar! It took over an hour of waiting before we got in (which he did with no complaint) and then when we went in he just sat in my lap while I held his arm and other hand. He watched the needle go in and the blood be taken – no crying, no fuss – cool as a cucumber and then took his sticker for Boris!

I must admit that it’s pretty embarrassing when your child handles a blood test better than you do!

Then we had a quick bite of lunch (Ethan refused to eat the hospital custard … it’s possible that the custard upset him more than the blood test), and then the race back to the car before the parking ticket ran out.

Very proud of my little man and hoping for good blood test results.

Ethan’s annual fundraising night 2014!

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The big night is rapidly approaching!

Please join us for Ethan’s big annual fundraising night for 2014. This year we are offering tours of the brain cancer laboratory, so you can see where your donations are going. Take the opportunity to meet Dr Sasha Rogers, this year’s scholarship recipient. We will also be holding an auction and raffle to raise funds for the scholarship.

If you would like to join us, please RSVP to us (Shannon 0403 339 178 or shannon@ethandaviesscholarship.com.au).

We look forward to seeing you on the night!

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.

Entertainment Book fundraiser

Our good friend and supporter Jacky has once again volunteered to sell Entertainment Books to raise money for Ethan’s Scholarship!

Entertainment Book memberships for 2014-2015 come in two varieties: the traditional book membership with the gold card and vouchers, and the new digital membership which can be used on an Apple or Android device.

If you’d like to support Ethan’s Scholarship by buying a membership, please follow this link to place an order. The Scholarship will receive 20% from every sale.