Tag Archives: awareness

Bake 4 Edie – DIPG Awareness

Bake4Edie Poster

On 17th May, we’re holding our second #Bake4Edie event, asking businesses, organisations, schools and stay at home worker’s/parents to hold or get involved in a cake and bake sale to help raise funds and awareness of DIPG.

For more information on D.I.P.G. and why we’ve chosen this date, please view our D.I.P.G. Awareness Day post.

Last time we reached our target of £5000! Please help us beat this on the 17th May! Feel free to print off and use the poster below to get your friends and co-workers involved too, and don’t forget to post your photos and tag them #Bake4Edie, or comment below and let us know you’re taking part!

Bake4Edie Poster

Spider-Ede to Line Up at the Randox Health Grand National

Grand National Race Card for the Honourary 41st Runner

Organisers of Saturday’s Randox Health Grand National have awarded an honorary 41st place in the World’s greatest race to Edie. This massive show of support will help raise awareness of DIPG and Edie’s fight by bringing it to the attention of a truly global audience.

In 2017, Jockey Club Racecourses (JCR) created an honorary berth in the race for five year old Bradley Lowery, helping to raise awareness of Bradley’s fight with neuroblastoma, and they have continued to work closely with the Bradley Lowery Foundation (BLF) afterwards. It’s through this link with the BLF, who support Edie and the Spider-Ede Appeal, that this amazing honour has come about.

Edie’s place on the racecard is explained on the Randox Health website, where they wrote:

In the racecard, Edie’s red and blue silks represent the colours of her favourite superhero, Spiderman, who also appears as her trainer. Her age is listed (3) and her elder sister Niamh and younger brother Leonard are her jockeys for the day. Edie’s actual weight (14 kilograms) also appears.

Also featured are Edie’s parents and grandparents: her father Stephen and mother Ashleigh, and her grandfather Chris and grandmothers Hazel and Ann.

Her write-up in the racecard reads: Making her Aintree debut, Edie loves walking in the park, playing with her puppy Ellie and gymnastics. But most of all she loves playing with her brother & sister and cuddles with Mummy & Daddy. Sure to make an impact, so will be well supported.

Whilst you can’t bet on Spider-Ede at the Grand National you can back Edie by donating to the Spider-Ede Appeal via Just Giving or Text Edie03 £(Amount up to 10) to 70070.

You can read more about this story on the Randox Health website and also on the BBC News site.

The Jockey Club have also produced the following video to introduce Edie:

Weekly Roundup – 8th April

Hi all, it’s our weekly round-up post to say thank you to those who have held an event or participated in a sponsored event for us and to let you know what you can look forward to next week! As always, we want to say a huge thank you to everyone who is mentioned below, for those who have attended/supported and for everyone who has made a donation no matter what size. We appreciate you all ❤️💙

We are adding more and more events to our calendar so please take a look on this to see what’s going on in the next week on our Upcoming Events.

On Friday we had another Bingo night with Captain America! Due to the Easter holidays, the turnout was lower than last time however we still raised £650! Many thanks to all who attended and of course our own Steve Smith for donning the Captain America outfit again and calling the numbers.

Saturday morning saw the attic sale take place hosted by Edie’s Angels. The rain was heavy but that didn’t stop our angels, and they raised £695! Claire Hazler also raised £83 in cupcake sales, and a further £134 was raised from selling Spider-Ede merchandise, so just over £900 raised in total. Thank you to all of the angels, volunteers and those who braved the rain and came and bought items.

Steph Ward held a cake sale in Birkenhead Park by the Park run. Thank you to Steph for also braving the awful weather!

We also had three events taken place up at Marlowe Road Church in Wallasey yesterday. All held by Karen Stevenson, we had a Popcats party in the morning, a cake sale and tombola early afternoon, followed by a party with Mrs Freckles after that. A raffle was also held throughout the day. A huge thank you to Karen for organising all of this and of course those who attended. A total of £1625 was raised for the day!

Then in the evening the Clarence Hotel held a charity race evening, auction and raffle too. This was a great success! Thanks to all at the Clarence for getting involved in this and those who took part.

This week we also heard that a friend of Edie’s Grandad, Rob Aslett, has raised £1500 for a sponsored slim (lost 27lb, well done Rob!)

In addition to the above, thank yous are also due to Whieldon’s Butchers and their customers for collecting over £40 in the shop, and Halifax in Birkenhead have collected £500.

We have some totals in from last week’s events too. The Gladstone theatre night for Edie raised over £8300; the golf day in Prenton raised over £4090; the sponsored swim arranged by AquaSafe raised over £3590; and Easter Ede raised £2111!

Next week’s main event is the long awaited LFC Legends fundraiser on Friday 13th, with live music, Richy Sheehy will be performing ‘We’ve got Salah!’, an auction and more!

On Sunday we also have a Charity Race afternoon being held at St. Joseph’s Social Club (The Joey’s) in Birkenhead.

We also want to say good luck to

Hayes Travel ladies doing their sponsored walk (postponed from March when it snowed!);
Steve Copeland is running the Tunnel 10k;
A small group of age 3-4 children, including Edie’s cousins, from Town Lane Infant’s nursery classes are walking up Moel Famau.

Apologies if we’ve missed anyone out. Please let us know in the comments below. If you are holding a fundraiser or wish to, please email fundraising@spider-ede.org.uk so that we can send you our ePack and get you on our events calendar.

Donate online: JustGiving.spider-ede.org.uk
Or text EDIE03 £(amount up to 10) to 70070

Marathon Madness Completed

28701619_1680041792077041_522075600863843271_oJohn and Dave,

We thank you both for going out of your way travelling 3 different countries and pushing yourselves to your limits.
We thank you for taking something you enjoy and using it to make a difference!
For inspiring others and opening their minds.

You are true heroes, selfless and beautiful.

John completed 4 marathons in 4 days in 3 countries and Dave joined him for the last 2. This was all for the 6 Uk children with DIPG travelling to Mexico for treatment.

In the Uk, there is simply no hope for our children, we are told to go and make happy memories as inevitably they will die. Well we are not prepared to give up on our beautiful little souls, there is hope, in Mexico they are trying all they can to help our children and come up with an answer.
Our Uk government currently does not support or fund this treatment and so we have to do it ourselves.

That is when people like John & Dave step in, the aim of this Marathon Madness was to raise awareness and gain some publicity. But John also decided they would raise some much needed funds for us all along the way! He set the target at £2000 and we are so thankful to all that donated as that target has been exceeded and his crowdfund page is now on £2500!!! 🙌🙌🙌

Thank you for all that got involved, running alongside John & Dave, words of encouragement, donations this all means so much to us.
John and Dave don’t ever stop being you! We look forward to seeing what you come up with next John as we know you too well to think this will be the last 💪💪💪

A big thank you to the businesses who sponsored John & Dave even though the pair were more than prepared to fund it themselves (reluctant to accept money for their travel & accommodation)

14 degrees down – http://www.14degreesdown.com
Flo Gas – http://www.flogas.co.uk
Pearl Dragon Restaurant – http://www.pearldragon.co.uk
DG Technology – http://www.dg.uk
Proform Group – http://www.proformgroup.co.uk

All our love, Ashleigh, Steve and all of our Uk DIPG families here in Monterrey.

#cure4cam Cameron, Waringstown
#tousaveczoé Zoé, Southampton
#teamkaleigh Kaleigh, Essex
#helpluke Luke, East Lothian
#helplucy Lucy, Wirral
#fight4edie Edie, Wirral

John Hammond’s Marathon Runs

John Hammond

Tomorrow, John Hammond, who has already run 42 miles in his Stadium run just a couple of weeks ago to help raise funds for Edie, is embarking on a new challenge. He has decided that to raise awareness of DIPG around the UK he is going to run a marathon in the home town of each of the other 4 children from the UK, who are currently receiving treatment in Mexico. John is well know on the Wirral and has had amazing support and it’s time to spread this awareness further.

John Hammond
These marathons are not being spaced out however, they are being run over 4 days, in 3 different countries!

All money raised will be split between the 6 children currently fighting DIPG in Mexico.

  • The Spider-Ede Appeal – Edie May Molyneux – #fight4edie
  • Lucy’s Pineapple Fund – Lucy Moroney – #helplucy
  • Kaleigh’s Trust – Kaleigh Lau – #teamkaleigh
  • Cure4Cam – Cameron Finnegan – #cure4camfund
  • Help Luke – Luke Stewart – #helpluke
  • Association Princesse Zoé – Zoé Donneaud – #tousaveczoé

The Marathons

John will be starting his first marathon on Thursday 15th March at 10am in Waringstown, Northern Ireland. Starting from Camerons school, Brownlow Integrated College, Craigavon, Cameron’s Dad, some family friends and some of the children at Cameron’s school will be joining John at some part of the run.

John will then fly back to Liverpool Airport and drive down to Southampton to run a Marathon in Zoe’s home town on Friday 16th March at 10am. There is no particular route planned at the moment.

Saturday 17th March brings an early start, 7.30am! John will be joined by his friend Dave Huyton and they will both be running in Kaleigh’s home town, starting from the Premier Inn Buckhurst Hill and joining in with the Hackney Marshes Parkrun around 9am.

Finally a long drive up to Scotland for both John and Dave, where they will be running their marathon in Luke’s homeland, East Lothian. This will be a 10amstart with no route planned at the moment.

John continues to raise awareness for both Edie and Lucy, who are both from John’s home, Wirral. As he already does so much to support both campaigns and recently ran a 42 mile run from Manchester to Wirral via Liverpool, it was decided in order to raise more awareness outside of Wirral he would run his marathons for all children in the 4 other areas. Plus the decision to miss out Wirral is because we know that the people of Wirral will support John no matter where he runs!

With Thanks

John and all 6 families would like to thank the below companies for sponsoring John in his 4 marathons for 6 children;

Thank you also to:

14 Degrees Down for printing John and Dave’s marathon t-shirts.

A big thank you to Steve Smith (Part of The Spider-Ede Appeal fundraising team) for lending John his car to make the journey from Liverpool to Southampton, London, Scotland and back to Wirral.

Finally, we also want to take this opportunity to say a huge thank you to John himself, who is selflessly donating his time and energy to help raise awareness of all 6 UK children currently receiving treatment in Mexico.

To show your support you can sponsor John on his JustGiving page.



I know I’m not the most visibly active participant of our campaign, and most of the time, I simply don’t have any words! It’s difficult to say anything, or express how you feel when part of your life, your reason for being alive, a piece of your heart, has been crushed, torn apart, never to be the same again.

Everything seems so much worse at night, everyone at home is in bed and it makes you feel that much more isolated and alone.

So here we sit, in intensive care where our baby is fighting the biggest fight of her and probably all of our lives and I have to admit, that some days, the battle seems hopeless, impossible even? How can this beautiful little thing be going through something so devastatingly shit!! Even now, being where we are, doing what we’ve done, I can’t believe this is happening!

It’s hard staying positive all the time, especially when the treatment is working so well that the tumour is becoming swollen with the amount of destruction, but because her tumour was so big to begin with, the extra swelling is making her decline severely as if she was in progression! We are having to spend so much time in intensive care that the treatment fund is dwindling away, faster than it can be raised!

I question things all the time, thinking, have we done the right thing?! But then as I look at her, she looks like she’s listening to every word I say, even though I’m not talking, almost like she can hear my worry and feel my pain!

It’s at that moment that I get an email, an email that made what I was writing go in a very different direction…. At first it felt like I was writing in despair, in grief? But since this all began, when I’ve felt at my lowest, like there seemed to be very little hope, something happens, something that slaps me in the face and snaps me out of it!

This time is was an email with an attached letter from our local MP, who told us about a meeting they had with the Under Secretary of State for Health Lord O’Shaughnessy. It said that they had stressed the urgency for aid in these desperate times and to try and spur the government into action! They have asked that the government help contribute to the treatment expenses in our fight against DIPG! If they decide that there is something they can do to help it could change the outlook for so many children!! I can tell you that this email was a very welcome ray of light at a dark time!

Whatever happens with their decision I’ll leave you with this,

Without all of you, none of this would be possible, there are no words powerful enough to express our gratitude for what you are doing or to tell you how very proud we are of each and every one of you!

From the bottom of our hearts, thank you!!


Wirral Globe article: Politicians call on Government to support two children receiving inoperable brain tumour treatment in Mexico

Throwing a Fund Raiser?

If you are thinking of or already planning a fund raiser for the Spider-Ede appeal then we want to know about it and we want to help! We’ve put together a folder full of artwork and files that may be of use. You can access these files via our Fund Raising page. If there’s anything you need which isn’t there please let us know and we’ll try and get something sorted for you.

Files available are:

  • High resolution logos
  • Sticker designs
  • T’shirt designs
  • Collection bucket / pot stickers designs
  • A5 flyers
  • Event poster template
  • Sponsorship form
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