Events & Initiatives

London Marathon runner Alex Price runs for Chordoma UK.

Here's the message from Alex Price. Please support this remarkable young woman running her first marathon here in London for a great cause.

 On the morning of April 23rd 2017,  I will be preparing my tiny little legs to run 26.2 miles for the 2017 London Marathon on behalf of the wonderful charity Chordoma UK. I was inspired to run for Chordoma after watching one of my best friends, run the marathon in 2015 in aid of his mother. Ollie's Mum Sue, was diagnosed with Chordoma in 2008, a rare primary bone cancer that can affect people of all ages. 

In March 2013 Ollie's parents launched Chordoma UK with the aim of finding a cure and effective treatment for this relentless disease. I am absolutely honoured to be undertaking such a monumental challenge for such a cause, through which I hope to do them proud. 

Chordoma is a rare primary bone cancer, meaning that it arises in bone (rather than spreads to bone). The bones involved are those at the base of the skull, the vertebral bodies (back bones), and the bone of the sacrum and coccyx at the base of the spine. Chordoma is thought to arise from a persistent embryonic tissue (notochordal cells), which normally disappears before birth, but can persist in some people. However, the majority of individuals with notochordal remnants do not develop Chordoma. Chordoma is part of a family of cancers called sarcoma, which include cancers of the bones, cartilage, muscles and other connective tissue. Chordomas are generally slow growing, and tend to recur after treatment.

For more information regarding this terrible disease, please visit www.chordoma-uk.org or should you wish to support Chordoma UK and to help further research please send an e-mail to info@chordoma-uk.org 

https://tinyurl.com/kmkwdlf 

The wine tasting aspect of my job is taking a back seat as I hit the streets of London in hope that it will help me over the finish line*. Please join me in raising both money and awareness for the crucial research of this relatively unknown cancer. There is little funding available for research into this relentless bone cancer mainly because it is relatively rare, occurring in only 1 in 800,000 of the population. Without a focused approach to raising money for research into chordoma, little will change quickly.

Any donation big or small is MASSIVELY appreciated, so please take a moment to donate. Your support and donations mean a huge amount and for that I am very thankful!

So much love to you all.

BIG KISSES

Pricey


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Support Paris Marathon runner and CUK fundraiser Alex.

Here is Alex's' story and  his motivation for running for CUK in memory of his dear friend Cedric In French and English. To support Alex follow this link..

https://chordomauk.everydayhero.com/uk/alexparismarathon

Hi everyone,

I'm running the Paris marathon on 9th April for a cause very close to me. A great friend of mine and to so many others, Cedric Berton, passed away in March 2015 after a long and courageous battle with a rare form of cancer known as Chordoma. Unfortunately work is ongoing to find an effective cure for Chordoma and I am raising money for the Chroma UK to help with their research.

Ceddy was original from Reims, about an hour from Paris. I have no doubt that Ceddy would tell me, with a smile, that a stumpy Irish man would be better off having a beer by the Seine than running around the Paris streets and I would be very grateful if you could help me raise as much money in his memory as I can.

More information on the Chroma UK can be found here (http://chordoma-uk.org).

Many thanks in advance for your support,

Alex


Bonjour à tous,
Je cours le marathon de Paris le 9 avril pour soutenir une cause qui m'est très proche. Mon grand ami Cedric Berton (et également l'ami de tant d'autres) est décédé en 2015 après une longue et courageuse bataille contre une forme rare de cancer appelée Chordoma. A ce jour, aucun remède efficace n'a été trouvée pour soigner Chordoma. C'est pourquoi je veux amasser des fonds pour la Fondation Chordoma Europe pour aider leurs recherches.

Ceddy était originaire de Reims, à environ une heure de Paris. Je vois deja d'ici Ceddy me disant en rigolant qu'un Irlandais serait mieux avec une bière a la main au bord de la Seine que courant dans les rues de Paris. Pour nous souvenir, j'espère pouvoir recueillir autant d'argent que je le peux.

Vous trouverez plus d'informations sur la Chordoma UK (http://chordoma-uk.org)

Merci beaucoup pour votre soutien,

Alex


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This story dropped off our site so we're reloading it to say thanks again to Charlotte and her supporters who ran the Hampton Court 1/2 marathon for Chordoma UK back in March... Here's Charlotte's just giving page with all the background to her wonderful fundraising effort - clearly in the past tense!


I am running for Emma who last year was diagnosed with a rare and often fatal form of cancer, Chordoma. Emma has 3 young children - the smallest was just 6 months old when she was diagnosed.

Following crucial surgery, Emma had most of the tumour removed but the tumour eroded a lot of her vertebra on one side of her neck so she now has metalwork , leading to very limited movement in the neck. Surgery didn't remove all of the tumour. It's a watch and wait game with regular MRI scans. Best case scenario is that the tumour can be controlled and managed and remains stable for some time. At some point in the future Emma will need further surgery and proton beam radiation therapy.

So, in the face of all this Emma decided to run a half marathon. Having not run before Emma is determined to run and raise funds for Chordoma UK. Vital research is needed to help tackle this - literally - 1 in a million form of cancer. If she can achieve one thing Emma would like to ensure that someone else being diagnosed as she was, can have access to more information about the disease and ultimately  - npot be told that it is incurable.

So - Emma got New Malden running. Inspired by her and wanting to support her the running group just keeps growing. Two to three times a week people meet and - well, just run. Some days there are two runners, some days there are ten. There has been torrential rain and there have been head torches. People turn up despite teething babies and tantrum prone toddlers up at 4 am (maybe because of the latter). Older children have been known to join in. By bringing these people together, friendships have formed, mental and physical health is improved and above all we are hoping to make a difference for anyone who finds themselves in the position Emma did last year.


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Emma Holloway and Team Chordoma raise some £9,000 at Hampton Court 1/2 Marathon

Last November I was diagnosed with Chordoma, a very rare (1 in a million) primary bone cancer that grows out of the spine and skull. My daughter was just six months old and my boys were six and eight. Being told I had an incurable cancer was totally devastating. The initial fear of not being around to look after my children and them having very little memory of me was overwhelmingly sad. 

In some ways I've been very lucky as my tumour was a purely incidental finding. Had I not been a total hypochondriac, raiding the bank of Mum and Dad to pay for a MRI scan, it would've gone unnoticed. The tumour had compromised my spine to such an extent my spinal cord was bending and if left it would of resulted in paralysis. After nine long hours of surgery my fantastic neurosurgeon and his team managed to ensure that, at present, my spinal cord is no longer compromised and a lot of the tumour has been removed.

The tumour eroded vertebrae on the left side of my neck so I now have a great deal of metalwork, leading to very limited movement. Surgery didn't remove all of my tumour, I still have some near to my brain so for now it's a watch and wait game with regular MRI scans. The best case scenario is that my tumour can be controlled and managed and remains stable for some time. At some point in the future I will certainly need further surgery and proton beam radiation therapy.

Walking around knowing there is still some tumour left in my neck and the likelihood that it will grow back does sometimes feel like a heavy burden to live with, there is a constant hum of anxiety. I know I'm not dying but the fear of the tumour growing in a way that compromises my faculties is unnerving. As a family we're slowly learning to accept what has happened and try not to play the 'what if' game too often. We're also trying to appreciate and see the positives and live in the now. I see one of those positives as still being able to run.

In April 2016, Team Chordoma (as we have now become) were, in the main, non runners. This team has come together in an extraordinary way and I've been truly touched and overwhelmed by their commitment to training for this event; overcoming the dark evenings training with headlights and torches, waking up at the crack of dawn to fit in a 'bootcamp' all this done before the school run, before work and at times, before both. Every single one of them totally rocks. What they probably don't realise is how much they've saved my sanity over the last six months. 

I decided to enter the Hampton Court Half Marathon because I want to raise awareness for this form of cancer. Together as a team we'll be running for the Chordoma charity. Chordoma is rare, therefore it gets little awareness and low funding. Chordoma UK is a fantastic charity and with our help they can use any donations to fund vital research. Through recent fundraising Chordoma UK has just been able to employ two researchers at UCL who work solely on understanding this rare type of cancer and also researching possible new treatments and a cure. This is great progress as at present options for treating Chordoma are limited to just surgery and proton beam therapy.

One of the huge positives I've taken from my diagnosis is the overwhelming support I've received from truly wonderful friends and my local community. The running is part of the journey - and it's an important part. I'm training with just as much determination as I have towards not letting Chordoma rule my life. I'm not going to say the training is easy. There are mornings when my 16 month old daughter has been up most the night, I'm exhausted and the last thing I want to do is drag myself to the park. I'm running to raise money in the hope that one day when someone just like me faces a Chordoma diagnosis they won't be told it's incurable. They'll be given options.

It would mean so much if you could spare some dosh, a little or a lot, it's all greatly appreciated. Thank you!


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5 lads, 100k, 20 hours...... in aid of CUK

Gus Ide, Charlie Doggart, James Doggart, Jerry Stileman and Will Fitz-Gibbon are all participating in the Trailwalker endurance challenge in the South Downs, (a course of 100k in a set time limit, which we aim to complete in 20 hours or under). The charity which we are taking part for is very close to the Fitz-Gibbon family; Chordoma UK (www.chordoma-uk.org). Susan was diagnosed with a chordoma in 2007.

Visit the Trailwalker website for further information.  http://www.oxfam.org.uk/trailwalker

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London Marathon 2016.. First Chordoma UK runners Ed and Laura have confirmed places

Ed Major and Laura Evans are running the 2016 Virgin Money London Marathon for a fund dedicated to research into a rare cancer, Chordoma.

Chordoma is a rare primary bone cancer (which starts in rather than spreads to bones). It can occur at the base of the skull, the spine or the sacrum and coccyx (base of spine). It is generally slow growing and frequently recurs after treatment.

For those diagnosed with chordoma treatment options are limited. Initial diagnosis is often difficult as its presenting symptoms can mimic more common musculoskeletal pain or other more common diseases.

Professor Flanagan at the UCL Cancer Institute has carried out research which led to a definitive marker for chordoma, but now further work is underway to use these findings to discover how best to treat patients.

All money raised by Ed and Laura will be going towards this research.

Ed said, "After losing my Father to Chordoma in 2015 I am running in his memory. Chordoma UK was closely in his heart as he had hands on experience with what the research could do for all rare cancer sufferers. I hope by running, I can raise the profile of the great work the team at Chordoma UK is doing"

To support their marathon please sponsor them


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CHORDOMA COMMUNITY CONFERENCE - MILAN

This conference is a must for all whose life is connected by or with chordoma. This one day conference is being held on Sunday 22nd November in Milan and full details are found through the Chordoma Foundation. Visit the dedicated page by connecting to this link. http://www.chordomafoundation.org/italian-community-conference/


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ROYAL PARKS 1/2 MARATHON (LONDON)

This amazing event through London's Royal Parks attracts some 16,0000 participants and is a huge attraction.

From the website….. www.royalparkshalf.com

In 2008 we created a spectacular Half Marathon in central London – the first and only one of its kind. The stunning 13.1 mile route takes in the capital’s world-famous landmarks on closed roads,  and four of London’s eight Royal Parks – Hyde Park, The Green Park, St James’s Park and Kensington Gardens. 

    We, like all of our runners, want to see the best of London’s city and parks, and so we build a fantastic event that goes beyond just running 13.1 miles, and design the day so that spectators have as much fun as the runners themselves.

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    Sophia, Harry & Yianna runs the 10k Richmond Running Festival for Chordoma UK.

    Unfortunately this dreadful and extremely rare disease has affected our family. Last year our world fell apart when Harry was diagnosed with a rare clival CNS chordoma - but after getting over the shock, we were helped by a brilliant neurosurgeon- David Choi - and his team at the National Hospital for Neurology and Neuroscience to get Harry on the long road to recovery - even though we kept this quiet at the time, now we want to raise as much money into research for this terrible and rare disease as possible - so that whoever has the misfortune of being diagnosed with this can have the best possible outcome - by giving much needed money to this very worthwhile cause - they need as much money as possible because being such a rare disease, it misses out on vital funding. http://www.richmondrunningfestival.com/ where Sophia, Harry and Yianna are aiming to raise £1,000 for Chordoma UK.
     

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    The Nuts Challenge

    Recently Aimee & Steve lost a family member and friend to chordoma. They want to raise awareness of chordoma and raise money to help others in the same situation. In September 2015 (Saturday 5th & Sunday 6th) Steve and Aimee are taking part in a challenge called the "nuts challenge", http://www.thenutschallenge.co.uk/ this an intense obstacle course of 14k with over 400 obstacles in mud, water and woodland. The location is SWIRES FARM, HENFOLD LANE, DORKING, SURREY, RH5 4RP so do come down to support their amazing fund raising initiative.



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    Wow... Sean runs the Three Peaks Challenge AND the Sutton fun run for Chordoma UK!

    Earlier this year my Grandad was diagnosed with a very rare form of bone cancer, Chordoma. As this is such a rare form of cancer there is not much funding for research and treatment, and as such I am raising money for this worthy cause this summer. I will be completing a double challenge, the 8.5 mile Sutton fun run (June) and the 26 mile Yorkshire 3 peak challenge in July. Any support with my efforts for my cause is greatly appreciated.



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    Angela's travels with her tumour.... raising much needed funds for UCL CIRT & Chordoma UK.

    Hi, thanks for visiting my page (see link below). Through Virgin Money Giving you can sponsor me  as I attempt to walk the South West Coast Path.

    In September 2013 I was diagnosed with a clival chordoma & following surgery I travelled to the USA to the University of Florida Proton Therapy Institute, where I received Proton treatment, courtesy of our wonderful NHS.

    I would now like to take my tumour on another adventure, a little closer to home this time. I will be attempting to walk the South West Coast Path - 630 miles, starting on 11th May, hopefully completing by the end of July. Whilst walking I hope to raise funds for UCL Cancer Institute Research Trust & Chordoma UK.

    All donations will be quickly processed and passed to UCL. Virgin Money Giving is a not for profit organisation and will claim gift aid on the charity's behalf where the donor is eligible for this.

    I really appreciate all your support and thank you for any donations.

    Angela x


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    THE LONDON MARATHON - Ollie & Kate run for ChordomaUK. Please support them to make their goal of £4,000 a reality! See the link below

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    An evening of wine and philanthropy..

    Will take place at The Wallace Collection in central London where invited supporters of ChordomaUK, researchers, clinicians and a wide range of guests from the world of commerce will gather to admire one of London's finest collections of French 18th century painting, furniture and porcelain. The evening presents Chordoma UK with a wonderful opportunity to further enhance awareness of chordoma to an influential audience that is unlikely to have heard about this relentless disease.    


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    Tim runs the Great South Run for Chordoma UK..

    Do PLEASE support wonderful Tim Wakelin running the Great South Run for @chordoma UK. Here's Tim's just giving link so you can dig deep and help him help support Chordoma UK http://tinyurl.com/kba3krv  More about The Great South Run here on the official web-site http://www.greatrun.org  What a great chap!!!!

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    Guitars on the Beach....

    The “Guitars On The Beach” event will take place tomorrow,  Saturday 6th September 2014 on the main beach in Lyme Regis, Dorset. Thanks to ChordomaUK supporter Sue Puddicombe there'll be masses going on including collection points for Chordoma UK.....

    http://www.guitarsonthebeach.co.uk/ Last year there were 2,267 Guitarists on the beach - imaging that! So fancy a trip down to Dorset then go see this amazing event....



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    Sarah Holdsworth competes in the London Triathlon Saturday 2nd August 2014

     I am swimming, cycling and running (or possibly crawling by that stage) the Sprint discipline of the London Triathlon on Saturday 2nd August.  This basically involves my swimming 750m in the lovely open water area of the Docklands of London, followed by a 20km bike ride and finally a 5km run – all wearing a rather fetching and (at the moment) quite tight Triathlon suit (although I am allowed an equally fetching wet suit for the swimming part!).

    I am raising money for a charity that I am sure is dear to all of us as it has been set up by our lovely previous ARLA President Susan Fitz-Gibbon called Chordoma-UK.  My just giving page is http://uk.virginmoneygiving.com/SarahHoldsworth1 and I would really appreciate any donation you feel able to make – I promise I will produce photos before, during and after (it won’t be pretty, specifically the goggles and fetching skin tight swimming hat along with the wet suit make me look a little like a  Seal!).

    I am not a huge fitness fanatic and I have set myself quite a target – thank you in advance for anything you feel able to donate to this extremely important cause. 

    I have only circulated this to those listed above so far but please feel free to forward on far and wide – the more money I manage to raise the better!


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    1,000 miles for Chordoma UK

    A month to go before  Henry Martin starts his marathon cycle ride from London To Nice on behalf of Chordoma UK. The T-Shirts have ben ordered and Henry is well on his way to achieving his £2,200 goal, Henry needs all the support he can get so do visit his giving page http://uk.virginmoney.com/HenryMartin1 and help him exceed his goal.

     

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    Ginny and chums run the RATRACE DIRTY WEEKEND for Chordoma UK

    The amazing Ginny Major and a whole bunch of chums are intending to get seriously filthy by taking part in the gruelling  RatRace run on 10th May 2014...  http://www.ratracedirtyweekend.com/ to be held at Burghley House.  This challenging event is a new one for Chordoma UK supporters and we all wish Ginny and her friends every success.

    Have a look at the Rat Race website, be impressed and then show you support please to the team... 

    http://www.justgiving.com/major-race


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    Running the London Marathon for Chordoma UK...

    Coming up soon is the famous London Marathon. 26 Gruelling miles and one of the work's largest and most competitive marathons.

    For 2014 we have three runners aiming to raise awareness and significant funds for CHORDOMA UK.

    Joanne Bennett, daughter of Sue Puddicombe a chordoma survivor is looking for support so please encourage Joanne by going onto her Virgin Giving page and making a donation...  www.virginmoneygiving.com/joannebennett5

    Freddie Fitz-Gibbon and Louis Timpany are aiming to repeat Freddie`s amazing 2013 London Marathon and increase awareness into this relentless disease. http://uk.virginmoneygiving.com/team/Louisandfreddie

    Please support them all....


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    The ICE BALL. at the Syon Park Hilton

    An exciting evening being organised by the Victorian Foundation with Chordoma UK being a significant beneficiary.  The event is being held in West London at the exclusive Syon Park Hilton.   The evening will commence with a Champagne Reception and there will be a fantastic Gala Dinner, there will be great activities with auctions, raffle, casino and dancing.

     

    Do hope you can join us with a table of 10 or 12.  Contact us to find out more!

     

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    Lensbury Dinner Dance

    An exciting evening at The Lensbury, Teddington, Dinner Dance in aid of Chordoma UK, a night of fun, socialising in the wonderful surroundings of The Lensbury Club.

    This event is now sold out.

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    Weekly Pilates Class in Kew - breaking for a week on the 23rd October and commencing again on the 6th November through to the 11th December

    Pilates Class every Wednesday at 7.30pm, all profits to Chordoma UK.
    At St.Winefrides Church Hall, Leybourne Park, Kew. Hour long class for all levels.

    Thank you to everyone for all the money that has been raised so far, you are a great group and hopefully I will be well enough to come and join you after half term.  Sue Fitz-Gibbon

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    The Great River Race

    The boat is a traditional Pangbourne Gig and named "UNCOMMON"  - after all Chordoma is uncommon!  The crew`s event name - The CHORDOMA CAN CREW...

    21 miles of tidal Thames waters... from the heart of London`s  Dockland’s to beautiful Richmond. Two teams rowing for Chordoma UK in London's iconic River Marathon. 10 rowers plus 1 x crew and cox  - now full.

    Opportunities still remain from anyone interested in participating? Your commitment is simply to raise a minimum of £500.00 plus your share of the boat costs (£100- £150.00 to include all entry costs) Contact us and we`ll be delighted to see if we can secure another boat for you or your group..

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    Lyme Regis - Dorset “Guitars on the Beach”

    Organisers are planning a bid to set a British record for the number of guitarists playing one song together at the same time, in an event which will be raising much-needed funds for research into Chordoma.

    The “Guitars On The Beach” event will take place at 5.00pm on Saturday 7th September 2013 on the main beach in Lyme Regis, Dorset. The massive band will play Buddy Holly’s “Rave On” in an event timed to coincide with the “Food Rocks” Festival organised by chef Mark Hix.

    As part of the event, collections will be held for four nominated charities, one of which is ChordomaUK. Anybody who wants to take part in a fun gastronomic andmusical event, while benefitting an exceptionally good cause, is encouraged to head for Lyme Regis on 7th September. Further details, including a section for guitarists who want to be part of the band, can be found at www.guitarsonthebeach.co.uk

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    Charlie Maughan competes in the Virgin Active London Triathlon


    You can still donate by clicking on the link below.

    Thank you Charlie, for competing in this triathlon for Chordoma UK and doing it in record time!

    Sue x  

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    Freddie runs The London Marathon

    Freddie Fitz-Gibbon, 20 year old son of chordoma patient and co-founder of Chordoma UK, Susan Fitz-Gibbon runs his first marathon. Freddie`s CAN (Chordoma Action Now) Fund has already attracted donations exceeding £1,000, his aim is to raise £5,000+ for chordoma research.

    So far Freddie has raised an amazing £7,000+ and achieved a remarkable 3hrs 54 mins in his first marathon.

    Visit Freddie’s CAN donation page

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    Chordoma UK Launch

    Chordoma UK officially launches

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    Chordoma Community Conference

    Chordoma UK founders Gerald & Susan Fitz-Gibbon and Professor Adrianne Flanagan attend the Chordoma Community Conference in Boston USA.

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    What we want to achieve

    Funds are needed to develop new therapies for controlling the growth of this tumour.

    Over the last few years, Professor Flanagan’s research team and colleagues have taken tumours from patients treated at RNOH (with their consent and ethical approval), and 5 chordoma cell lines have been established from these tumours. 3 other cell lines have been generously donated from other researchers. This means that for the first time, a reasonable number of cell lines are available to screen against a large number of drugs / compounds (1000-2000), some of which are already used in the treatment of other tumours, and some of which are in development.

    By studying the effect of 100s of drugs on the chordoma cell lines we should be able to identify what induces the expression of brachyury. If can identify this/these, we have other potential targets to which drugs can be developed.

    We will also investigate if we can ‘silence’ brachyury in the chordoma cells using a virus. Research using these cell lines is has recently commenced and it is hoped that the outcome of this work will have an impact on the way all chordoma patients are treated worldwide.

    Planning your own event

    If you wish to start your own fundraising initiative, we can help by providing ideas, advice and practical assistance. Fill in this form:

    Get involved!

    Help us raise money to fund more research into Chordoma