DIPG Awareness Day: Why This Day Matters
- amanda0955
- 3 days ago
- 4 min read
Every 9 days, another family in the UK hears the words no parent should ever have to hear: “There’s no cure. Take your child home and make memories.”
That’s the reality of DIPG (Diffuse Intrinsic Pontine Glioma) one of the most aggressive and heart-breaking childhood cancers.
And that’s why today, on DIPG Awareness Day, we’re standing up. Speaking out. And calling on superheroes everywhere to help us fund hope.
So… what is DIPG?
DIPG is a rare and devastating brain tumour that mostly affects children between the ages of 4 and 11. It grows in the PONS areas of the brainstem, the part of the brain that controls essential functions like breathing, movement and heartbeat.
It is not hereditary and occurs equally among boys and girls.
It’s inoperable. There’s no effective cure. And treatments haven’t improved in over 50 years.
The UK’s DIPG Reality
In the UK, around 30-40 children are diagnosed with DIPG each year.That may sound small, but every single one of these children is a life cut short, and a family torn apart.
Only 1 in 10 children with DIPG survive for more than 2 years after diagnosis.
The average life expectancy for a child diagnosed with DIPG is less than 12 months.
Despite the devastation caused by DIPG, it receives insufficient childhood cancer funding in the UK.
These numbers are not just statistics—they are real children, real families, and real futures that are being lost.
The hardest part? The funding gap.
Despite being one of the deadliest childhood cancers, DIPG receives insufficient research investment, and virtually 0% all Government direct cancer research funding. That’s not just unfair—it’s unacceptable.
That’s why raising awareness matters. Because we can’t change what we don’t talk about. And if we don’t act, nothing will change.
This DIPG Awareness Day, we’re fighting back—with your help
For DIPG Awareness Day 2025, we’re aiming to raise as much as possible calling on everyday heroes like YOU to join the campaign!
So far, thanks to your incredible support, we’ve already raised almost £2000 on the page But we’re not done yet.
There’s still time to join in and be a hero for children with DIPG.
Donate £1: that’s all we’re asking.
Share it with 10 friends and ask them to do the same.
Buy a yellow ribbon badge from our shop. 100% of the funds go directly towards this target. You can buy a ribbon pin here.
We know £1 doesn’t go far these days. You can’t buy a coffee. Or a meal deal. You can’t even get most chocolate bars anymore!
But £1 can help fund research. £1 can give hope. And £1 from thousands of people? That’s a movement.
Don't forget to tick Gift Aid
If you're a UK taxpayer, adding Gift Aid means your £1 donation becomes £1.25 at no extra cost to you. That extra 25p could help us fund even more vital research. Just tick the Gift Aid box when you donate online – it only takes a second but makes a big difference.
Remembering Abbie: The Inspiration Behind Abbie’s Army
Abbie Eunice Louise was just 6 years old when our world was turned upside down. It started with a simple feeling of tiredness, a slight loss of energy, and trouble with her eyes. What seemed like a routine check-up turned into a nightmare when doctors found a mass on her brainstem.
On 13th April 2011, Abbie was diagnosed with DIPG. For the next few months, Abbie bravely underwent palliative radiotherapy at The Royal Marsden Hospital, where she received exceptional care.
In her final months, Abbie was determined to live life to the fullest. We took her on one last holiday to Dorset, a place filled with fond memories. Despite the toll the illness took on her, Abbie smiled, swam in the waves, and made the most of every moment.
Throughout her battle, Abbie never once believed she wouldn't get better. Her greatest wish was simply to return to school and be with her friends. Sadly, on 13th September 2011, just five months after her diagnosis, Abbie passed away in her parents' arms.
In 2012, our charity Abbie’s Army was founded in her memory to raise awareness, fund research, and support other families affected by DIPG.
Abbie’s spirit and legacy continue to inspire the fight against DIPG, and our mission is to ensure no other child or family faces this heartbreak without hope.
This DIPG Awareness Day, be a part of something powerful 💛
Whether you’re running a marathon, baking cakes, dressing up like your favourite superhero, or simply sharing this post—you are part of the fight. And we need you.
Let’s raise our voices.
Let’s fund the future.
Let’s do it for Abbie, for the children we’ve lost, and for those still fighting.
Be a hero. Donate £1. Share it with 10 friends. Buy a badge. Make a difference 🦸
Because when we act together, even the smallest donation can lead to something super.