In June 2024 we received the devastating news that my younger sister Elaine (44yrs old) was diagnosed with a Diffuse Glioblastoma Multiforme. It's a highly aggressive form of brain cancer with a prognosis of a mere 12-15 months.

Her standard of care treatment has involved an awake craniotomy (brain surgery) where 95% of the tumour was removed, radiotherapy and chemotherapy. Due to the aggressive nature of the tumour, it’s only a matter of time for the tumour to return and potentially spread- as you can imagine this is a horrific time for us as a family.

On diagnosis we researched what sort of treatment might be possible outside of the usual standard of care and we discovered the IOZK clinic based in Cologne, Germany. They offer cutting edge new immunotherapy treatments including a personalised vaccine which have given us so much hope but it comes at a huge cost as it’s not yet covered by the NHS or private insurance.

So far, thanks to the extremely generous contributions we’ve raised £34K and Elaine has almost completed Phase 1 of the immunotherapy programme in Germany - the effects have been really positive! Phase 2 includes the administration of the personalised vaccine so we are looking to raise a further £50-60K to cover the extensive remaining costs. The vaccine has been in development for the past 5 months…. It’s based on Elaine’s individualised cancer cells and should help to strengthen her immune system. The results so far for this type of immunotherapy are very promising.

We are desperate to extend Elaine’s life so that she can be here to see her children grow up. It’s a horrendously cruel and unfair disease which we will are willing to fight with everything we have.

We’ve engaged with the wonderful brainstrust who are a supportive and caring charity, and they have agreed to work with us, as they do others seeking access to safe, novel treatments. We will fundraise in partnership with and under the umbrella of brainstrust as we launch many new fund-raising ideas including a hike challenge, The Dragon Ride, a gala dinner and quiz nights.

Thanks to brainstrust, all donations will go towards Elaine’s treatment. Any excess funds not required for her treatment as well as any the Gift Aid will be used by brainstrust for their wider charitable work, for public benefit. This will support the Charity so that they can continue to provide amazing support to others living with brain tumours.

If you would like to get involved please do let us know! We are so grateful for the support and donations so far - it means the absolute world. Thank you from the bottom of our hearts.

With love and gratitude,

Carolyn, Elaine & family

Update 23rd May 25

Thanks to the incredible donations Elaine has just completed phase 2 at IOZK- this means that both of the personalised vaccinations have been administered and we are now progressing onto the maintenance phase 3. This will involve checkpoint inhibitors which will (a) see how well the immune system has responded to the vaccine and (b) it acts as a booster to help destruct the remaining cancer cells.

For now, we wait, hope and pray it's going to do the trick and give her more time with her children. Considering Elaine is heading towards the 12 month mark post GBM diagnosis she's doing amazingly well (is still keeping up with her weekly PT session!) so it's vital we carry on raising the much needed funds so that she can continue to access the care at IOZK in Germany.

Coming up we have Ali and Tony taking on the gruelling Dragon Ride challenge in Wales (June 22nd) and we are busy planning a hike challenge for September too!

24K still to raise....let's go!

We are Fundraising for Elaine’s brain tumour treatment in partnership with, and under the umbrella of brainstrust, a Charity registered with the Charity Commission for England and Wales as Charity No. 1114634, and registered with the Office of the Scottish Charity Regulator as Charity No. SC044642.

brainstrust’s mission is to help people in the UK to feel less afraid, less alone, more confident and more resourced following a brain tumour diagnosis.

Registered Office: 4 Yvery Court, Castle Road, Cowes, Isle of Wight, PO31 7QG, UK. www.brainstrust.org.uk