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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Harcourts Central listing promotion

We’re excited to announce a listing promotion by our newest partner, Harcourts Central, as part of their commitment to raise funds for Ethan’s Scholarship! The promotion is in addition to the firm’s existing sponsorship commitments (including as the major sponsor of our upcoming Ependymoma Awareness Day event).

If you’re looking to sell your property in the near future, please consider listing with Harcourts Central! If you list with Harcourts Central for a three-month period (on an exclusive basis) before 30 June 2014 on their standard terms and conditions, upon settlement of the sale the firm will donate $500 from their selling fee to Ethan’s Scholarship.

You can contact the team at Harcourts Central by telephone on (08) 9268 9088. Alternatively, you can drop in to the firm’s offices at 182 Bennett Street, East Perth.

Many thanks to Laurence Goodman for putting this generous promotion together.

Harcourts Listing Promotion

A thankyou

A brief note of thanks to Daniel Ricciardo and his family for their support of Ethan’s Scholarship.

Daniel kindly donated a signed, half-size Toro Rosso helmet as a fundraising item. Well worth the one and a half hours it took me to drive from the southern suburbs to Malaga in peak hour traffic last week to collect it!

Helmet

At this stage, we’ll probably auction the helmet off at this year’s major fundraiser at the Institute. We wish Daniel all the best for this year’s F1 season with Red Bull.

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 🙂

Making the most of every day with Ethan

I’ve mentioned the CERN Foundation before in my post about our upcoming Ependymoma Awareness Day event. I also put up a post in relation to last year’s Ependymoma Awareness Day. Like us, the CERN Foundation is dedicated to ultimately finding a cure for ependymoma, although Ethan’s Scholarship is focused on the paediatric version of the disease (and the Foundation doesn’t currently have a research facility in Australia).

I was touched to be invited to share Ethan’s story on the CERN Foundation’s website, which you can read here. Ethan is also featured in the Foundation’s February newsletter.

One of the questions I was asked was whether I had any advice for other parents of children with ependymoma. This was my response:

The most important thing for us is to make the most of every day we have together with Ethan. As parents, the best advice we can give to others with children battling ependymoma is to discard all expectations you might have of your child, appreciate your child for who they are, take nothing for granted, and take heart from small victories.

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