Ependymoma Awareness Day

Yesterday was the second Ependymoma Awareness Day promoted by the CERN Foundation (CERN stands for Collaborative Ependymoma Research Network – not to be confused with the organisation which operates the Large Hadron Collider).

To mark the day, hundreds of monarch butterflies were released at St. Jude Children’s Research Hospital in Memphis, Tennessee. Each butterfly was intended to symbolise the hope of improved treatments for ependymoma sufferers.

You can watch a news report on the butterfly release here.

Update: the CERN Foundation has just released its report on the day, as well as its own video of the butterfly release (much better quality than the news report).

Hundreds of brightly colored butterflies covered the skies over St. Jude Children’s Research Hospital as they were released by patients, scientists and doctors to mark the second annual Ependymoma Awareness Day on April 18, 2013. Ependymoma is a rare cancer of the brain or spinal cord that strikes children and adults. The event is organized by the Collaborative Ependymoma Research Network (CERN) Foundation.

CERN’s scientists and clinicians work in concert to better understand and speed advances against ependymoma in both pediatric and adult patients. St. Jude leads the pediatric studies, and M.D. Anderson Cancer Center leads the adult studies.

The butterfly release coincided with the semi-annual CERN investigator meeting at St. Jude. The butterfly release symbolizes the buoyed hope of improved treatments for this devastating cancer through collaboration.

“Through this team science approach, talented researchers are uniting in one cause that studies ependymoma from the laboratory to the clinic and across the life span,” said Richard Gilbertson, M.D., Ph.D., Comprehensive Cancer Center director at St. Jude and co-principal investigator of CERN. “Our collaboration with CERN is a natural extension of St. Jude’s cornerstone philosophy to freely share research and discoveries as a means to advance cures worldwide.”

CERN began in 2006 to jumpstart ependymoma research globally. Since then, more than 20 institutions have joined the endeavor. More than 80 patients have been enrolled in CERN clinical trials and discoveries in the laboratory are fueling progress.

Market stall

So, no sleep-in for me last Sunday – up in the dark at 4.30am (trying desperately not to wake any children) and then driving in with Christie-Lee’s dad Steve to wait in the queue for a market stall at Market City Community Market in Canning Vale.

Steve and I had packed his ute the night before and it was chockas (did I spell that right?). There was quite a wait outside the gates and we weren’t let in until about 6.30am. In the meantime, I was treated to Steve’s radio station of choice, Curtin FM, which I’ve since found out “caters mainly to a mature audience with musical tastes that favour the 50s, 60s and 70s”. I often say half-jokingly that I stopped listening to new music after the early 00s – I gather that Steve stopped listening to new music during one of the three decades mentioned above.

Setting up at the start of the day.

The markets open to the public at 7.00am, but we hadn’t even finished setting up before we were fielding interest (including from other stall holders) on some of the bigger-ticket items: an electric mower, a petrol line trimmer and edger, and some framed Green Day memorabilia (thanks Kinta!). It’s surprising what goes (e.g. old plastic food containers) and what doesn’t (e.g. an unopened beach cricket set).

Although we were on the outskirts of the market, we benefited from some of the traffic generated by the plant stall next door. The lady running the stall also walked over later in the morning and put a $10.00 donation straight into the collection tin, which was very kind.

We met a number of other generous people who paid above the asking price for items  – the only downside to that being that it meant taking more stuff home with us!

Running the stall was a lot of work – we weren’t allowed to pack up until the market closed at 1.00pm – but it meant another few hundred dollars in the kitty for the Scholarship (and a few extra spaces in my overflowing garage). Many thanks to the weather gods for not raining on us, to Ashlie Hirniak for providing the collection tins and printed materials, to Steve, Maureen and Kinta for donating items, to Steve for all his help both leading up to and on the day, and (most of all) to my lovely wife Christie-Lee for holding the fort against the three under-threes for most of her Sunday.

Foot patches, going cheap.

Foot pads, going cheap.

The end of a long morning.

The end of a long morning.








Update: I’ve just been told that our efforts raised $362.75 – every little bit counts!

April Scholarship update

Lots of stuff happening at the moment!

First off, we’ll be doing a market stall at the Market City Community Market in Canning Vale this Sunday, 14 April 2013. We’ll be selling a pile of stuff, and rattling some collection tins. All of the sale proceeds will go to the Scholarship. It would be great to see you down there (the trading hours are 7am to 1pm).

All of the chocolates from the first round of the Cadbury chocolate fundraiser have been distributed, and it’s now a case of getting the proceeds back to the lovely Samantha so that we can order some more! Thanks to everyone who put their hands up to sell chocolates.

Team Super Ethan! is getting some great fundraising momentum, with HBF Run for a Reason now fast approaching in May. At the time of writing, the team has already raised $1,875 of its $5,000 target! Special mention must go to Sarah Sheehan, who has personally raised $975 (and is training the house down) – great job Sez! If you’d like to help us reach our target by making a donation, you can do so via this link.

For those who want to join Team Super Ethan, there are two things to sign up for: the team for the actual run (or walk) when you first register online (remember to nominate Telethon Institute for Child Health Research as your charity), and the team fundraising page. You can join the team fundraising page here. The password for the fundraising page is “superethan”. If you’re stuck, there is a guide for entering teams on the HBF Run for a Reason website.

Our friend Jacky is now raising funds for the Scholarship by selling 2013/2014 Entertainment Books. The books will be available in early May. If you’d like to order one, just follow this link. From the purchase price for each book, 20% goes to the Scholarship.

In case you missed it, Ethan’s story was featured in the 21 March 2013 edition of The West Australian. You can read the online version of the story here.

We’ve smashed through the 300 likes barrier on the Scholarship’s Facebook page. If you’d like to see more regular updates about Ethan’s progress and Scholarship news, just “like” the page. Right now, Christie-Lee is posting daily updates on Ethan’s progress as he learns to eat again, as part of his “food diary”. There is also a live feed from the Facebook page on the home page of this website.

Finally, a big thank you to Andrew Gibbs and the rest of Leeming Spartan Cricket Club, who presented me with a $500.00 cheque for Scholarship at the club’s wind up last Friday night. With the club’s support, Andrew raised the money by putting on a number of sausage sizzles throughout the cricket season. The donation is much appreciated, especially when you consider that the club is a not-for-profit organisation (which you would normally expect to be raising money for its own purposes).

There are a number of other things in the pipeline, but it’s all hush-hush at the moment – watch this space!

If you’d like to get involved in fundraising for the Scholarship, please contact Ashlie Hirniak (by phone on (08) 9489 7998 or via ahirniak@ichr.uwa.edu.au) at the Institute.

Ethan in training for HBF Run for a Reason...

Ethan in “training” for HBF Run for a Reason…