Latest News

Hellie's Story from December 2016

The following piece below comes from the blog of Hellie Meaney:

Her reasons for writing the blog and for why we have published this under our news section:

This blog is for a few reasons: to keep my loving family and friends up to date with how my therapy is going and how I am; to be a source of information, comfort and support to other people who find themselves in similar circumstances; and to perhaps be of interest and use to the medical profession, as a patient’s viewpoint of the experience.

It might also be cathartic for me and means I won’t need to keep revisiting the same ground over and over. Whatever your reason for reading it, thank you, and I hope it helps you in some way, whatever form that too might take.

Hellie X

Blog 1:

Hi Everyone.

I had my last PBT treatment today at the Paul Scherrer Institute and tomorrow I fly home. Almost eight weeks ago it seemed to Mari and I that this day would never arrive, but it has, and it’s wonderful. I am so, so looking forward to seeing Mike, Flo and Patrick. Words don’t capture…

Thank you to the PSI medical team for accepting me onto the PB therapy programme. They are an amazing group of people who bring the opportunity of hope and healing to peoples’ lives. Each one of them has been kind, gentle, knowledgeable and efficient. I’m so fortunate and thankful to them all, the radiologists especially.

I have to mention also specially, Dr Fritz…a great doctor and a really lovely man, who’s good advice now is to get back home, put this behind me and get back to normal life. Which I will. Turns out he wasn’t Dr Spock after all. And the nearest thing I saw to Uhuru boots were actually my own, rather-tatty-now black, winter boots.

There have been lots of moments of laughter and joy here, despite the circumstances, as you will know…because loads of them are on this blog. The things that have been ever-present and overwhelming are the love, kindness, strength of spirit, generosity and loving care from my sister, Mari. She has done something incredible for me, for my family, for my friends. What a beautiful, overflowing heart she has. And even this blog was her brilliant idea! Thank you, beyond all the bells in the universe (I know you’ll love that), my Autumn Sister. You’re ding-dong and I love you x

See you soon and thanks for reading!

Love Hellie


Hellie Meaney very sadly lost her life in February 2019 following a brave battle with Chordoma.

News archive

August 2019

Hellie's Story from December 2016 New funding for research into Chordoma

April 2019

My Day Out – Classic Car Outing 2019

March 2019

Notochordal Cell Tumours Workshop Chordoma research prize

February 2019

Understanding Chordoma: A National Cohort Study

March 2018

Understanding Chordoma: A National Cohort Study

December 2017

Congratulations to Professor Adrienne Flanagan

August 2017

Why do one event when you can do two!

May 2017

UK chordoma patient choose Prague for his PBT...UK's first high-energy proton beam machine in...New Malden Farmers Market supports Chordoma UK

April 2017

Spring 2017 update from Chordoma UK and...Emma Holloway and "Team Chordoma" raises some...Thank you to the Tanner TrustParis marathon runner Alex raises almost...Charlotte raises £900 for Chordoma UK...Another London Marathon run for CUK

October 2016

What has McDonald's & chordoma got in common?...

August 2016

Chordoma Biobank coordinator Clare Unwin...

June 2016

Clare Unwin Joins CUK / UCL Cancer Institute..

January 2016

Chordoma UK funds UCL Cancer Institute Biobank...2016 London Marathon team runners - Ed and...

November 2015

You've broken the £400,000 milestone!

October 2015

CUK founders Gerald & Susan Fitz-Gibbon at...Still plenty of time to register for the Milan...

September 2015

Well done to Aimee & Steve with another...What an amazing fund raising weekend it was...Guitars on The Beach - another huge success...

July 2015

Angela's travels with her tumour.....Sean runs the the 8.5 mile Sutton fun run and...Aimee and Steve run the "Nuts Challenge for...

April 2015

GlobeImmune Announces Opening of Randomized...

March 2015

Oliver and Kate run their first marathon for...Wow….. $1/2m raised so far!

January 2015

The simple math that explains why you may (or...A great start to 2015

December 2014

Sue Puddicombe does it again!With the state of cancer diagnosis a source of...John Baron MP, chairman of the All Party...John Baron MP hosts and addresses ‘Cancer52’...

November 2014

Updating James's Story........ Exceptional Wallace Collection fundraiser for...Chordoma UK receives a bequest of £10,000.00News from GlobeImmune Inc following their...

October 2014

Some facts, figures and a little trumpet...Hollywood here we come…..Lord Darzi formally unveils plans today to...Tim runs for Chordoma UK

September 2014

Central London Gallery Event...

August 2014

With a quite extraordinary result for...Sarah Holdsworth - runs like mad for Chordoma...

June 2014

Dinner Dance, Ferrari's Country Hotel,...Reception at St James's PalaceFunds are needed NOW to develop new therapies...Raising funds for research and awareness...

May 2014


April 2014

Getting close to £100k !

March 2014

RAT RACE DIRTY WEEKEND. Ginny Major goes for it!The LONDON MARATHON.. Freddie, Joanne and...HAPPY BIRTHDAY TO US, HAPPY BIRTHDAY TO US.....Plans now being made for the Great River Race...Lots happening this spring.....

September 2013

NEW CHORDOMA UK WRISTBANDS AVAILABLE.ChordomaUK participating in London's 21 mile...

August 2013

Blood transfusions during cancer treatment... ...Imatinib.. (Glivec in the UK) often talked...New Initiative Launches to Organize the UK...Welcome Lisa....

June 2013

Researchers at Oxford University Hospitals are...Identification of repurposed small molecule...National Cancer Institute Opens First...Chordoma UK now joined the Cancer52 Alliance...Walkers raise over £2,500.00 for Chordoma UK

April 2013

Mail on Sunday article raises awareness

February 2013

Chi-chi Nwanoku & friends Chamber Concert benefitResearch - what have we achieved so far
Get involved!

Help us raise money to fund more research into Chordoma