CML Support Group in Birmingham

A quick heads-up for all CML patients in the Midlands. Leukaemia Care are holding their first CML support group at the Novotel Birmingham Hotel on Broad Street.

The event is later this month, on Saturday 28th January, and will run from 1030 until 1300. It’s free to attend and Dr Manos Nikolousis, Consultant Haematologist, will be on hand to answer your questions on CML.

Please let Leukaemia Care know if you are attending so they are able to cater for all.

Download the poster as a PDF HERE.

MPs to debate the availability of cancer drugs in Parliament

I am pleased to announce that next Tuesday, 20th October, MPs will take part in a Westminster Hall Debate on the availability of cancer drugs. This has been sought by DUP MP Jim Shannon, a big advocate of cancer patients, following his attendance at a dinner to discuss access to medicines for blood and rarer cancers earlier in the year. The debate will give MPs the opportunity to discuss the significant problems many cancer patients in England are currently facing in terms of gaining access to the medicines they need.

You will have read about the fight I have taken up to help 43 year old Birmingham father of four, Khalid Younis, gain access to ponatinib for his resistant Chronic Myeloid Leukaemia (CML), including the meeting we had last week with his local MP, Roger Godsiff. I have alerted Roger to the fact that this debate is happening and asked if he can raise Khalid’s case with the Minister to see if we can progress the situation further with the Government and NHS England. In addition, an Access CML Drugs briefing has gone out to a number of MPs I’ve met before, or who have an interest in CML, stem cell transplantation or the ending of the Cancer Drugs Fund. The briefing highlights our key issues and the inequity of access English patients currently face compared to those in Scotland and Wales. You can download the briefing below.

Whilst the debate won’t focus solely on CML or blood cancer, I hope Khalid’s story will form part of the discussion and be used to demonstrate the problems which exist with the current evaluation methods used for cancer medicines in England, particularly with the Cancer Drugs Fund (CDF) refusing to appraise any new medicines between now and when the Fund ends in March 2016. I hope the issue of how the National Institute for Health and Care Excellence (NICE) and the CDF work (or don’t!) together will also be discussed; any future system of evaluation for cancer medicines needs to be able to work for cancers with small patient populations and previous drugs have, sadly, fallen down the gap between NICE and the CDF.

I would encourage everyone to contact their local MP and ask them to attend and contribute to the debate. You can find out who your local MP is here. The more MPs that attend, the greater the level of awareness there will be amongst parliamentarians of the issues we face.

I will post again following the debate.

Kris Griffin – founder of Access CML Drugs

ACCESS CML DRUGS – WESTMINSTER HALL DEBATE – BRIEFING

Khalid Younis – an update

You’ll recall that we’ve been working with Khalid Younis, the father-of-four who lives in England and has received the devastating news that he does not qualify for Ponatinib, a treatment freely available in Scotland and Wales. The new ‘wonder’ drug is the only treatment left for the 43-year-old who is battling Chronic Myleoid Leukaemia (CML), of which there are 700 new cases a year in the UK. His body has become resistant to all other medicines and he is not eligible for a stem cell transplant. Mr Younis, a former carpet fitter, is being treated at Birmingham’s Queen Elizabeth Hospital and this drug is his last chance; he’s been told that his case is “not exceptional.” You can find my original posts HERE and HERE.

Whilst the story received exceptional media coverage, things may have appeared to have quietened down over the last two weeks. They haven’t.

Firstly, the petition set up by Debbie Williams has attracted 7,507 supports, the target is 10,000. If you haven’t signed the petition, please sign it now: www.change.org/p/nhs-nice-cancer-dad-denied-tratment

Kate from The Pamela Northcott Fund is putting together an appeal against the decision. Kate is an incredible person who has an amazing track record of supporting cancer patients who have been denied access to new drug therapies that have yet to be approved by NICE or refused by NICE. Kate offers this as a completely free service to patients, her reward is seeing a cancer patient on the right treatment. You can find more out about the Fund by visiting the website www.pamelanorthcottfund.org.uk.

Roger Godsiff MP, Khalid Younis, Kris Griffin

Khalid and I have been in touch with Khalid’s MP, Roger Godsiff – www.rogergodsiffmp.co.uk – who has written to NHS England, NICE and the Secretary of State for Health about the case. Roger has been incredibly supportive. We met up with him last week at his home and he listened with interest to Khalid’s story and offered advice on next steps.

If you are a patient, based in England and wish to take action on this matter, please get in touch with me through my contact form. I’ll ask you to write to your MP as a CML patient and request they too write to the Secretary of State to Health to highlight Khalid’s case. I’ll help you out with the wording of the letter.

Finally, if all else fails we are considering a fund-raising campaign to pay for Khalid’s drugs. We hope that it doesn’t come to that.

All things considered, Khalid is in incredibly good spirits. He very much appreciates the efforts that everyone is making and wishes to send thanks out to you all.

We’ll keep fighting. Thanks, Kris

Khalid Younis and Kris Griffin

Geoff Thomas & Le Tour team reaches Paris finale

In 2003 Geoff Thomas was diagnosed with chronic myeloid leukaemia (CML) and was given less than three months to live. Following treatment from Cure Leukaemia co-founder Professor Charlie Craddock, he has been in remission since January 2005. I was diagnosed in 2008 and received a very different treatment path, also from Professor Craddock. Geoff received a transplant and I take the drugs, we both understand how lucky we are to still be here.

I’m a football fan, so at first it was a thrill to meet Geoff. As the time has passed my admiration for him as a man and as an incredible charity fundraiser has grown. I’m blessed to know him, I love catching up with him, we put the world to rights and I’ve watched with pride as his Le Tour vision has taken shape.

Geoff Thomas and Kris Griffin

To celebrate being 10 years in remission his aim is to raise a huge £1million for Cure Leukaemia after riding ‘Le Tour – One Day Ahead’ and London 2 Paris. The £1million raised will go towards boosting the life-saving work at the Centre for Clinical Haematology at the QE Hospital – where he and I were treated by Professor Craddock. The money will increase the centres ability to deliver pioneering treatments for blood cancer patients at this centre of excellence in Birmingham.

So, last month Geoff cycled all twenty-one stages of the Tour de France, just one day ahead of Le Tour 2015. Along with a closed group of twenty participants, it was a once in a lifetime opportunity to complete one of the toughest physical challenges around.

Le Tour – One Day Ahead set off from Utrecht, Holland, on July 3 and since then each cyclist burned around 95,000 calories and climbed 40,000 metres in pedalling almost 2,100 miles. The team had to contend with 40-plus degree heat, wall-like ascents and frightening mountain-top thunderstorms in riding an average of 110 miles a day.

Geoff was joined by Birmingham-based duo Melissa Brand, aged 35, and Stephen Jones, 53, James Maltin, 39, of Wiltshire, Doug McKinnon, 55, from Brighton, Hayden Groves, 41, of Hertfordshire, Guildford-based Ciaran Doran, 49, Trevor Clarke, 49, from Rugby, Simon Gueller, 50, from Yorkshire, Dom Goggins, 30, of Manchester, and Helen Russell, 39, from Bromsgrove in riding the punishing Tour de France route, cycling each of the 21 stages a day before the professionals.

Helen and James required stitches after crashes during an eventful first week while Simon took on Le Tour just three weeks after suffering a collapsed lung and broken ribs and Doug had ongoing knee problems. The support staff were also kept busy treating dehydration, saddle sores, sickness and blisters to keep the riders on their bikes as they were pushed to the limit.

The team’s superhuman efforts have pushed Geoff’s fundraising total for Cure Leukaemia – the blood cancer charity he is Patron of and owes his life to – past the £650,000 mark. Le Tour – One Day Ahead followed hot on the heels of Geoff’s other major cycling challenge this summer, London 2 Paris. Both are flagship events in his bid to raise £2million for Cure Leukaemia inside two years.

A slightly controversial decision to ride two of the stages with former pr-cyclist Lance Armstrong has also been vindicated. Armstrong played a critical role in Geoff’s leukaemia battle, with the cyclist having beaten testicular cancer. Geoff was inspired by Lance Armstrong’s book It’s Not About the Bike: My Journey Back to Life and inspired Geoff to make the 2005 charity ride along the route of the Tour de France. Whilst not condoning his actions there has to come a point when we put the knives down and give people an opportunity to earn forgiveness. Armstrong raised over $500million dollars for his own charity and if his current actions mean that he is bringing publicity and donations to Le Tour then I don’t have a problem with that. It’s not a matter of principle, this one’s a matter of saving the lives of leukaemia patients and people like, UCI President, Brian Cookson could probably do with reminding themselves of that.

“We’re raised over £650,000 now and have set some really good foundations for next year and reaching that overall £2million target. London 2 Paris is only going to grow for Cure Leukaemia and Le Tour – One Day Ahead has gone worldwide. We’ve had so many people enquire about next year’s event that we might need a double-decker bus to fit the team in! Lance’s involvement has been central to that. It allowed us to put our message onto the world stage. People are more aware of what we’re trying to do and it’s up to me now to build on the foundations and raise a lot more awareness and money over the next five or ten years.”

For the record, Geoff did his very best to persuade me to join him, he was serious too, he always is when it comes down to fundraising. In my current state of fitness and aversion to bikes I had to decline. I explained that I’m more suited to the advocacy side of our work but he wasn’t having any of it. Can I see myself cycling 2,200 miles? No, but you never say never. And if anyone were to persuade me if would be Geoff.

Please sponsor Geoff, not only is his achievement an incredible one but the money is going to such a great cause, it actually makes me emotional thinking about it. You simply don’t realise how lucky you are until you sit in a cancer clinic, looking around, waiting and realising that much of it is built on charitable donations from amazing people. Please donate…

To sponsor Geoff, visit: www.justgiving.com/Geoff-Thomas-2015

To register your interest for Le Tour – One Day Ahead 2016 visit: www.beforethetour.com

Cure Leukaemia was established in 2003 to allow patients with blood cancer in our region to access the remarkably effective new treatments which were then becoming available. To find out more please visit: www.cureleukaemia.co.uk

The ex-England footballer and his team of ten amateur cyclists brought their brutal 3,360km ride to an end when they crossed the finish line under the shadow of the Eiffel Tower on Saturday afternoon, via the Arc de Triomphe and Champs-Elysees.

Geoff Thomas and Cure Leukaemia Launch Biggest Fundraiser

Ultimately, it’s about curing cancer and if that doesn’t grab your attention then nothing will.

Last night was the launch of the biggest fundraiser in the history of Cure Leukaemia, the Birmingham based charity founded by Professor Charlie Craddock and Graham Hampson Silk.

Deloitte in Brindley Place hosted the event where former England footballer Geoff Thomas told the audience he will hold two major cycling events in 2015 to support the work of Cure Leukaemia and Professor Charlie Craddock in Birmingham. This comes ten years after going into remission from leukaemia himself.

In 2003 Geoff was diagnosed with chronic myeloid leukaemia (CML) and was given less than three months to live. Following treatment from Cure Leukaemia co-founder Professor Charlie Craddock, including a bone marrow transplant from his sister, Geoff has been in remission since January 2005. Geoff now aims to raise £2million in two years by holding two unique cycling events for an exlsuive number of participants.

Firstly, in June 2015 Geoff will lead a closed group of 300 cyclists on a four-day, 500 kilometre cycling challenge: ‘London 2 Paris: Inspiring the Revolution’. The event is built for both keen cyclists and beginners looking for a new challenge – every aspect of the ride is planned with precision and will be a professional event for amateur riders. It might sound like an event only fit for cycling’s elite, but with four different speed groups, this is something anyone can achieve. It also boasts itself as one of the ONLY events that offers rolling road closures throughout France.

Six months after Geoff’s treatment finished in 2005 and inspired by cancer survivor and pro-cyclist Lance Armstrong, Geoff set himself the challenge of cycling the Tour de France 2005 route two days ahead of the race. Geoff succeeded in his 2005 challenge and his second major cycling event will revisit the challenge of cycling all twenty-one stages of the Tour de France; this time, just one day ahead of Le Tour 2015. Along with a closed group of only twenty participants, this will be a once in a lifetime opportunity to join Geoff in completing one of the toughest physical challenges around.

The event was a huge success with many signing up on the evening, Geoff was more energised than I’ve seen him for a long time and Charlie, with ususal humility, had a steely resolve that suggested these extra funds for the charity could be a real game-changer. We’ve already seen the Centre for Clinical Haematology at the QE Hospital in Birmingham become one of the leading centre in the world for the development of new drug and transplant treatments for patients with blood cancers. These new approaches to clinical care are providing a new economic force for the city – in life sciences. The focus on ‘cure’ from everyone at the charity is to be commended and the leadership from CEO, James McLaughlin has been outstanding.

Please visit the links and consider signing up and supporting these events.

www.l2prevolution.com
www.beforethetour.com
www.cureleukaemia.co.uk

£1935.46 raised for Beefy’s Walk for Leukaemia 2012

Just a short, off-topic, post today about fundraising. Earlier this year I walked over the Clent Hills (near Birmingham, UK) with Kelly and Luca, aged 7 months old, in his pushchair. It was 4 miles but felt like 40. We finished pretty much at the back of the field having to lift Luca and his pushchair out of the mud for the final quarter. It was really tough.

Many readers of this blog supported me and I’m delighted to say we raised £1935.46. Since we started walking with Ian Botham 4 years ago we’ve raised nearly £5k now and this recent amount is our very best yet. I think we have Luca to thank. I’d also like to thank Aston Villa Football Club for donating a signed shirt that I was able to auction on eBay.

The money raised goes to Leukaemia and Lymphoma Research and we are delighted to do what we can. Thanks everyone.

Kris, Kelly and Luca

 

With Sir Ian Botham after the walk for Leukaemia 2012.