Donate to RUN DIPG to help move towards a cure...

Hey Everyone :)

I've decided to shave my hair to raise awareness about Diffuse Intrinsic Pontine Glioma (DIPG), a rare and aggressive form of childhood brain cancer/tumour. My hope is that if you stick around for what I have to say in this post, you'll make the choice to donate to RUN DIPG. In my work, I've witnessed the devastating impact of childhood cancer on many young people's lives. In that same breath, I've also been deeply moved and inspired by the incredible strength and resilience of these same children and their families.

RUN DIPG is a charitable organisation dedicated to improving treatment outcomes for children diagnosed with DIPG. RUN DIPG raises awareness & fund critical medical research into DIPG, coordinated by Dr Matt Dun, a cancer researcher who lost his own beautiful daughter to DIPG after her diagnosis in 2018.

Shaving my hair is something I've considered for many years, but never had the guts to really do. My work this year raised the magnifying glass to this for me. I am shaving my hair to show solidarity with those who don't have a choice in the matter. While I'm writing this message I'm thinking of friends, family and all the young people I've worked with who have been impacted by cancer.

In being connected with so many lives who have been affected by cancer, DIPG has captivated my attention, and touched my heart. In shaving my hair for DIPG, I want to share the message that young people who are met with this devastating diagnosis, never lose their hair. This is because DIPG is not responsive to treatments like chemotherapy etc. While there are existing treatments that prolong life, it is an area of cancer research that requires more funding to search for curative treatment.

DIPG is a tumour that begins in the pons, a region located in the brainstem. The pons is responsible for relaying signals between various parts of the brain, including the cerebral cortex and the cerebellum. The tumour eventually infiltrates the brainstem tissue, which interferes with the normal functioning of the brain. The location affects essential functions such as breathing, heart rate, swallowing, balance, and eye movement. Since the pons is an integral part of the brain stem that connects the brain to the spinal cord, surgical removal is dangerous and essentially impossible. Consequently, treatment options are limited, and the prognosis is devastating.

This is why I would like to raise some money, but more importantly, awareness...because it wasn't until I joined the Oncology team that I had any awareness myself. If you are still with me at this stage...I am asking you to please donate to this fundraiser, as proceeds will go directly to supporting DIPG research. Your contribution will assist in advancing medical understanding of DIPG, support the development of innovative treatments and hopefully improve the prognosis for children who receive this awful diagnosis. Your donation, no matter the amount, will play a vital role in driving progress and giving hope to countless families who currently face this challenging journey.

Thank you for taking the time to read this, and double thanks if you've made the choice to donate or honour DIPG through discussions within your community. Let's keep the conversation going. I'll be buzzing my hair off at the end of July - stay tuned :)

Thank you in advance,

Edie