Author Archives: Spider-Ede

The Spider-Ede Music Festival

The Spider-Ede Music Festival - 2nd June, Vale Park, Wallasey

Come and join us on Saturday 2nd June, from 1pm until 5pm, in Vale Park, Wallasey, for our summer music festival! With music from Ragamuffin and guests, we’ll also have face painting, tombolas, a bouncy castle, beat the goalie, raffles, a Harley Davidson drive-by and more!

A big thank you to Claire Sim for arranging and co-ordinating the event, Christopher Locke for organising it, especially the music side of the day. Also a big thank you to Apollo Care for donating a spa voucher at the Village Hotel and for all their previous support with sponsorship for sweets and prizes.

Below are just some of the confirmed prizes up for grabs and a huge thank you for the prize donations:

The Spider-Ede Music Festival - 2nd June, Vale Park, Wallasey

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!

Love 80’s Liverpool Roadshow Fundraiser

Love 80s Liverpool Roadshow Event Poster

An evening of music and a chance to dance the night away to all the tracks you hear on Love 80’s radio! With freebies up for grabs, a prize for the best 80’s gear and a raffle with some ‘money can’t buy’ prizes as well.

When: Saturday, 23rd June 2018 from 7.30pm until late
Where: St Joseph’s Social Club, Birkenhead
Cost: £10 per person which includes a chip butty!

Tickets can be purchased via EventBrite (please note there is an additional charge imposed by EventBrite) or directly from St Joseph’s Social Club.

Love 80s Liverpool Roadshow Event Poster

Weekly Roundup 20th May

The Spider-Riders

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.

This week we held our second #Bake4Edie day on Thursday. We want to say thank you to those who participated in this for us or offered a place for us to sell cakes including Clare Hazler, Lauren Mutch, Louise Woods, Leasowe Leisure Centre, The Acorn in Higher Bebington, Town Lane Infant School, New Directions Education Wirral, The Madhouse in Bebington, Yvonne Ahern, Lucy Moss, Michelle Parson and Jenni White. We’re still awaiting a number of totals but the total so far stands at over £600!

On Friday evening, the Ivy Casey cup was held at Tranmere Rovers. 2 teams played a thrilling match. We want to say thank you to the donations made and collected and also the sponsorship also collected by these players. If you want to donate to their efforts you can do at . We also have photos from the match on Flickr.

Saturday evening saw a Poker tournament held at St Mary’s Cricket Club. Everyone was in good spirits and had a good time. Thank you to the organisers for hold this in aid of the appeal and also to those who attended. £100 was raised for the appeal!

Today we had our volunteers out in force at the Rock ‘n Roll Marathon in Liverpool rattling their buckets and collecting donations, alongside the Spider-Riders who led the runners out by bike and to help raise awareness of our appeal. Thank you to all of our volunteers for shaking those buckets, the cyclists and also to Paul McGregor, Colin O’Hanlon, Sammie Dalton, Steve Copeland, Liz Buckley and Joanne Dickenson for running today for the appeal.

Additional thank yous this week go to
Ford Social/Leisure Centre – £150
Ron Stading – £600 birthday donations
Freddie’s Bar – £61
Houlihans – £132
Madhouse – £50
Baby Ballet Collection – £160

Our main event of note for the forthcoming week is the family day for Edie at The Swan in Prenton. With lots of fun things for kids to do and hopefully this good weather will stick around, it’s sure to be a fun day for all!

The Way Fitness is also holding their Fitness-athon on Saturday from 7am, and there are still some slots free to join in the fitness classes being held (in return for a donation to the appeal). So please check the event for further details and how to book.

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

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

Weekly Roundup 29th April

Spider-Ede Appeal - Charity Race Night

It’s our weekly round up! 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 in person, on JustGiving or via sponsorship, no matter what size, we appreciate you all ❤️💙

Check out our events to see what’s coming up soon on our Upcoming Events calendar.

On Tuesday and Wednesday, the young dancers from Complete Works had their show up at the Floral Pavillion in New Brighton. Donations were collected for the appeal. Well done to all of the dancers and participants and thank you for collecting on our behalf.

Friday evening saw a charity race night held down in London, arranged by Stuart McClaughlin. Everyone had a brilliant night and over £7000 was raised! Thank you to all who attended and donated and a big thank you to Stuart.

On Saturday morning, the Snowdonia Superheroes climbed Mount Snowdon in aid of the appeal. A brilliant achievement by all and we’re so thankful for this. If you wish to show your support you can donate to their fundraising page at
https://www.justgiving.com/fundraising/snowdoniasuperheroes

We then had the long awaited Casino night at the Poulton Victoria Club in Wallasey. A night of fun and gambling (with pretend money!) and live music from Tequila! Thank you to all who attended, Tequila for the music and Kirsty for holding this event. Over £2000 has been raised!

On Saturday evening we also collected a £500 cheque from Buffs at the Tuebrook British Legion. Nanny Ann and Sophie headed over there to collect the cheque and also join in with their Bingo! We want to say thanks to all and a special mention to Tommy who chose the appeal and is also in hospital awaiting a triple bypass, we wish him well and for a speedy recovery.

On Sunday morning, Joe Baker ran the Chester half marathon for Edie. He did brilliantly and you can show your support for him on his fundraising page at
https://www.justgiving.com/fundraising/joseph-baker6

We also had a group of superheros complete the Yorkshire 3 peaks challenge today. You can donate to their efforts at https://www.justgiving.com/fundraising/katie-sutton7

Also thank yous go out to the following for collections and raffles
Rumbling Tums Cafe £160.74
ESSAR CWS Cake Sale £71.00
Dreams Hair & Beauty £72.32
Wirral Rugby Club £104.64
Europa Pools £45.86
Cock & Donkey £33.09
DW Sport £66.01
Hungrys in Little Sutton
Gill Hughes and daughters £200
Linda Reeve and Joan Janvier have also raised £315 with their ongoing time spent on sales of donated items.

Next week we have
Friday – Charity Karaoke Night at the Sportmans Arms

Also good luck to our couch to 5k team who are running the Spring Liverpool 5k on Saturday morning, keep an eye out for Joanne, Emily, Beci and Sarah, if you’re there!

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

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