Category Archives: News

Spider-Ede Rocks!

#SpiderEdeRocks

Can you help?

We are spreading awareness of Edie’s fight and DIPG by painting rocks, writing on them and adding photos to the Facebook group #SpiderEdeRocks.

If you would like to join in here’s what you need to do:

  • Join the facebook group #SpiderEdeRocks;
  • Decorate a rock using acrylic paint, marker pens or anything else you find that works;
  • Write on the rock:
    • The Spider-Ede Appeal
      #SpiderEdeRocks
      Post a photo
      Please hide again
  • Seal the rock with PVA glue or varnish;
  • Post a photo of your masterpiece to the facebook group #SpiderEdeRocks.

If you’d like some ideas of what to use, here are some acrylic paint pens and a spray seal on Amazon which are easy to use and far less messy that standard paints with a brush!

Weekly roundup 13th May

Edie's Football team plus some of the Hollyoaks cast, crew and friends.

Hi all, it’s our weekly round-up post to say thank you to everyone! 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 ❤️💙

See what’s coming up in the next few weeks on our event calendar and drop us a message or contact the host if you’re interested in attending any of them.

On Friday we had the much anticipated Edie’s 11 versus Hollyoaks football match. Despite the predicted rain we had a great turnout! The match was great and Edie’s 11 won 6-4. Over £2500 was raised! Well done to Aunty Kirsty and Joe for pulling off a great evening, all those who helped out before and during the match, and everyone who came! You can see more photos from the event at https://www.flickr.com/photos/chrisstading/sets/72157690950435630

On Saturday, Sharon Ellis ran the tough mudder half marathon in the Midlands. A hard but amazing run! You can still sponsor her on her fundraising page https://www.justgiving.com/fundraising/sharon-ellis18

This morning, Craig Northwood ran his first 5k on the Sketchers Trail in the Forest of Dean, coming in with a time of 35 minutes. Well done Craig! You can still sponsor him at https://www.justgiving.com/fundraising/c-northwood

We also want to say a huge thank you to the British Military Fitness members who have raised over £826 running 6000 miles over 15 weeks! This is an amazing distance run by around 20 BMF members.

Next week we have our next nationwide #Bake4Edie event. We have a few public events taking place and several offices getting involved. Please let us know if you’re holding one, no matter what size. Even if it’s with a few friends or family at home! Let’s just get talking about DIPG.

We also want to wish our runners good luck who are running in the Liverpool Rock n Roll Marathon on Sunday (Paul McGregor, Colin O’Hanlon, Steve Copeland, Sammie Dalton & Joanne White) and also Michelle Matthews who is running the Manchester 10k on the same day.

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

DIPG Awareness Day – 17th May

MRI Scan of Brain with DIPG

In the USA, 17th May 2017 was recognised as D.I.P.G awareness day by 22 states thanks to the Michael Mosier Foundation. This date is significant to them as it is the date that Michael passed away after fighting D.I.P.G. They are working to get these states and more to recognise this day again for 2018. We believe that we need a similar day of awareness here and therefore want to extend the awareness day to the UK on the 17th May 2018.

What is D.I.P.G?

MRI Scan of Brain with DIPGD.I.P.G stands for Diffuse Intrinsic Pontine Glioma. This is a grade IV tumour which is highly aggressive and currently considered untreatable in the UK. It originates in an area of the brainstem called the pons. The pons is responsible for vital bodily functions such as breathing, swallowing, blood pressure, sleeping, eyesight and balance. On average, 25-30 children a year are diagnosed with DIPG in the UK, that is equal to about a classroom full of children. There is no known medical reason for a child developing D.I.P.G.

Can you treat D.I.P.G?

Due to its location in the centre of the brain and the diffused nature of the tumour, it is not possible to surgically remove it. Standard chemotherapy is also not an option due to the blood brain barrier ‘protecting’ the tumour. Radiation is usually offered to help shrink the tumour however due to its aggressive nature this will only prolong life for a short while. The median age of survival is 9 months with doctors usually stating between 2 weeks and 2 years. Only 10% of children survive past 2 years and less than 1% survive for 5 years.

In 50 years, cancer research has helped us improve survival rates for a lot of different cancers, however there is no difference in the treatment now to 50 years ago for DIPG sufferers. Here, parents (as DIPG is most common in children aged between 5 and 10) are told to go home and make memories. As the tumour takes hold, the vital bodily functions are impaired. However, the sufferer’s knowledge and understanding is not affected, therefore they are fully aware of what is happening to them, they simply cannot control it, becoming locked inside their own body. It has to be one of the most cruel ways to suffer.

What Can We Do?

We need to spread awareness. We need to get people talking about this, not ignoring it. Yes it is rare but it’s not rare enough. Less than 4% of funding available goes into children’s cancer research, and even less again goes into brain cancer research. We need the politicians talking about this more. Dame Tessa Jowell has recently called for improvements in fighting cancer and last year a Scottish policitian even addressed parliament about DIPG and the doctors in Monterrey, Mexico, at the Instituto de Oncologia Intervencionista hospital, who are seemingly finding ways to treat this tumour using Intra-arterial chemotherapy and immunotherapy. Sadly there were not many politicians present.

During Channel 4’s Great British Bake Off – Stand Up to Cancer, aired on 3rd April 2018, a story was told by parents about their son who had battled DIPG but sadly lost his life to it. It had people searching for further information about the young boy and learning about it. This is the type of awareness we need. The more awareness and understanding there is, the better. It plays a significant role in both the research and care for DIPG.

Get Involved

We would love for as many people as possible to get involved with some sort of fundraising on May 17th, to help raise funds and spread awareness of this horrible disease. Our own event will be our second #BakeForEdie day, hopefully we can beat the first one held on 23rd March, which raised in excess of £5000 for the Spider-Ede Appeal. However, if baking isn’t ideal for you then please consider some activity to help us spread the word, whether it’s a sponsored walk, run or even silence, or a raffle within your place of work. Maybe a non-uniform day at school? We do need to raise vital funds for treatment, but we also want people to know and understand what the 17th May is all about, and what DIPG is. So, if all else fails, please just tell someone who may not know about it. Explain it to them, direct them to this page. Let’s get people talking more.

The Spider-Ede Appeal
Part of the Bradley Lowery Foundation
Charity Number: 1174333

Donate online at JustGiving

Personal donations/collections can also be made into our Halifax bank account.
Sortcode: 11-00-54
Account No: 13747967
Please make cheques payable to Ashleigh Stading or Stephen Molyneux (Edie’s parents)

Companies can make a charitable donation to our Bradley Lowery Foundation account. Please make cheques payable to The Bradley Lowery Foundation/Edith Molyneux. Bank details for direct transfers can be provided on request.

Vist the Michael Mosier Foundation

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

Spider-Ede on TV!

Ashleigh has been interviewed on Mexican Television, Las Noticias Televisa Monterrey, about their journey, Edie and the hospital in Monterrey. You can watch the video on the television’s twitter feed. If you wish to donate you can do so on our JustGiving page.

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