News
The All-Party Parliamentary Group on Brain Tumours (APPGBT) is being debated in Parliament on Thursday 9th March. This kind of opportunity to hold a debate in the main chamber has taken years to organise together with an incredible group of frontline Oncologists, Researchers and Brain Tumour Research Charities.
Although we are fully aware that purse strings are tight for the Government, having worked very closely with a number of researchers over the years, they are all saying similar things and the situation is desperate. This is not intended as a party political slight and the APPGBT is just that, an 'All Party Group'.
What is abundantly clear however, is that lots of publicity and pledges were made after the death of Dame Tessa Jowel to re address the historic and huge disparity of funds shared by different cancer types, especially given that brain cancer is responsible for the most cancer deaths in young adults and children, but the five year period it was to cover has now come to an end and only a small fraction of the 40 million has actually been paid out. Thus, we are calling for that to be released and used as it was intended. There are other issues (aren't there always) and if you wish to read more, please refer to the ’Pathway to a Cure – Breaking down the Barriers’ that was launched at Westminster on Tuesday 28th February.
Want to help further?
This is a link to the Template Letter which you are welcome to use and where it says, "write your personal story", you can add something as simple as having a connection with someone who has died from / been affected by a brain tumour and, as a result, you keep a supportive and interested eye on research funding developments.
Summary
The APPGBT report calls out the current funding system as unfit for purpose and claims patients and families continue to be let down despite the promise of millions of pounds of investment which has not materialised. It raises issues in the treatment of terminally ill children denied access to last resort clinical trials despite their parents’ wishes. Also highlighted is a so-called “valley of death” in which potential new treatments discovered in the laboratory fail to reach patients because of unnecessary complexity in the way research is funded.
Key recommendations of the inquiry include:
The Government should recognise brain tumour research as a critical priority, ring fencing £110 million of current and new funding
The research funding system has been built in silos and needs to be joined up from basic science through to clinical trials. Patients with brain tumours should have equity of access to trials of new anti-cancer drugs
Funding bodies should ring-fence specific funding for research into childhood brain tumours where survival rates for the most aggressive tumours have remained unchanged for decades leading to frustrated families seeking costly and unproven treatment abroad
We are very proud to be co-funding this incredible feat in progressive science together with Little Hero and Children with Cancer UK.
A more personalised and targeted treatment approach that Professor Clifford and his ground-breaking team of researchers at Newcastle University are offering through INSTINCT-MB, elicits significant hope of progress for children of the future.
As many of you will know, our dear son Skye, died just before his 6th Birthday. Despite being 'cured' from a high-grade brain tumour, he soon became paralysed from the neck down and was subsequently diagnosed with radio-chemo neurotoxicity which had been brought about by the therapies his little body endured, and tragically died soon after.
The INSTINCT-MB project will seek to develop new treatments, using new drugs and promising new immunotherapies known as CART-T cell therapies. Read more about the project here.
Winning the Oxford Bus Company #brandthebus competition and subsequent ongoing support from local people SPOTTING, SNAPPING & SHARING images of our #BigBlueDreamBus as it drives about on Oxford's roads, has helped us hit our fundraising goal.
This fun bus 'treasure hunt' is still ongoing, so please continue to look out for our Charity bus and share a photo on social media together with the hashtag #BigBlueDreamBus as it will raise £30 for EACH PHOTO SHARED! It costs you nothing, as the money is donated from these wonderful local businesses #white_rabbit_pizza_co, Andy Noyce at Nomads 7s Vets, Bower Bailey Solicitors, Master Spas Central, Conrad Energy, Fortitude Communications.
We are absolutely over the moon and so grateful to have won this fantastic opportunity to boost awareness for the work of Blue Skye Thinking. There are so many deserving Charities in Oxfordshire, and to have stood proudly alongside many of the big players was an honour indeed. We are thrilled that the Oxford Bus Company have continued with this unique competition to give smaller, but no less significant Charities, the chance to publicise what they do for the community.
Blue Skye Thinking was set up to strive to fill a gaping gap in the funding of paediatric brain tumour research, to support well-being projects at the Oxford Children’s Hospital and to promote awareness of early symptoms parents can look out for.
Fundamentally, we are not tackling a particularly easy subject which is why brain tumours have gained the reputation as ‘the unspoken cancer’. Like many industries, the wonderful medical researchers have taken a huge hit due to the pandemic. We need desperate support now more than ever. However, our approach has always been to conduct ourselves as our son did, with hope, dignity and positivity and we would very much like this to be reflected in the bus design - to inspire, and ‘lift’ people’s spirits in Oxfordshire when they see our bus and to #DREAMBIG whoever you are!
In a statement this morning from Phil Southall, managing director of OBC said “The response to the competition has been overwhelming and is a timely reminder of the good causes in our community, especially during this challenging period. While it remains difficult for transport operators during the pandemic, we felt it was important to maintain the Brand the Bus competition to give something back and continue to support good causes at a time when it is needed more than ever.”
We would like to thank everyone from the bottom of our hearts who took the time to pause from their manic lives to vote for the cause of Brain Tumour Research and the work of Blue Skye Thinking. A huge thank you also, to the dear bereaved families, who contributed a piece of their soul to help us put together our video pitch, I know it was not an easy undertaking. Having so many people support and believe in you drives you to fight on, however difficult that may be at times. We also want to extend a warm thank you to two good friends and exceptionally busy people, Steve Wright from Syndicut and Richard Gillingwater from Emotional Branding in volunteering to help us put our video pitch together.
Together with the Oxford Bus Company, we hope we can come up with a bus design worthy of the cause.
For more information about the work we do, please visit www.blueskyethinking.org
Sally Hall
Director and Founder
Thank you for all your votes - WE HAVE MADE IT TO THE TOP 10 FINALISTS!
https://www.oxfordbus.co.uk/competition/competition-gallery/
Together with the Oxford Bus Company, we want to make journeys count across our city. What do you dream about? Get on board our BIG BLUE DREAM BUS and see it as precious time to pause, reflect and dream big. Just imagine if our dream could be made a reality and save the life of a child? Run entirely by volunteers, Blue Skye Thinking is an Oxfordshire charity which strives to give all children diagnosed a better chance of survival and improved quality of life during and post treatment for the No.1 fatal cancer disease in young people. We provide a range of inspiring well-being projects at Oxford Children’s Hospital, awareness of early diagnosis signs in the community and fund Discovery Science, an area at the brink of losing specialist researchers in the field due to the pandemic.
Winning this competition would enable us to focus an entire year’s campaign around the magical concept of never giving up on your dreams, with the #OxfordDreamBus at the very heart.
We are able to offer the people of Oxford so much and have some wonderful ideas for the bus design to help a cause that has been kept in the dark for too long.
Together, we can make 2021 a year of positivity. KEEP EVERYTHING CROSSED xxxx
As part of our mini well-bing projects for 2020, we are thrilled to offer this magical service to all children at the Oxford Children’s Hospital and hope to branch out to other hospitals in 2021. A huge thank you to Neil Kitchin-Wilson as ‘Tricky the Twister’ for this generous service.
Please feel free to share with anyone you feel would benefit.
Prof. Steve Clifford, said that in the future, patients might not need to go through such aggressive treatment. "This new discovery allows us to undertake studies to see how we could use these insights to personalise treatments according to the biological features of each patient's tumour,"
Blue Skye Thinking funds Gemma Llargués Sistac, who has a degree in genetics, to assist Prof. Steve Clifford. The paediatric brain tumour research group at the Northern Institute for Cancer Research, led by Prof. Clifford, Dr. Williamson and Prof. Bailey, comprises over 20 scientists and clinicians working towards a better understanding of the biological basis of nervous system tumours, and translating this knowledge into new and better therapeutic strategies.
Gemma Llargués Sistac said "Blue Skye Thinking is a Charity that understands the struggle that research groups encounter when trying to establish new ways to treat childhood cancer. Supporting research as the charity does, brings an opportunity to develop new therapies to improve survival rates of children with brain tumours, which can be translated into better quality of life and reduced toxicities related to therapy in surviving patients." Miss Sistac is now following up targets that were implicated by the study to translate these discoveries into frontline treatment.
Dr Mark Gaze, Consultant Clinical Oncologist at Great Ormond Street Hospital (GOSH) Tweeted, "Some good news here - but the pipeline is a long one. Clinical research to validate theoretical advances takes time." It also takes funding which is why Blue Skye Thinking is determined to fight on to reach our next target.
We would like to thank all those who have been inspired and motivated by Skye and who have helped us get to this point. We truly couldn't have done it without you.
Tweet for you to copy and paste:
Glad to hear @HouseofCommons is addressing #BrainTumourDebate. The tragic fate of #SkyeHall @BlueSkyeThink can't be allowed to repeat itself
The first ever Select Petitions Committee Report on the chosen topic of Brain Tumour Research, resulted in a packed public gallery and over 60 MPs debating in Parliament yesterday.
The overwhelming message was that the number of life years lost to Brain Tumours are greater than any other cancer, yet the funding is pitifully low. Ministers were humbled and shocked at the enlightening information they gathered in preparation for this debate and that Brain Tumour Research is now well and truly in the public eye.
We met some parents today, all with desperate stories and we wish you all much love and strength. With the incidence of brain tumours on the rise, MPs Guy Opperman, Ian Stewart and Nicola Blackwood brought a fantastic level of clarity and understanding for the way forward for a despicable Cancer which claims more lives of children and young adults than any other. I am absolutely sure they will they continue to support us so that our children do not die in vain as we strive for better survival rates and a better quality of life post treatment.
For the full 3 hour Debate: http://parliamentlive.tv/…/3211c3a4-ea0c-425e-8277-43c7a512…
It has taken brain tumour charities almost 15 years to reach this point. Let's not waste it now! If you know someone who has been affected by a brain tumour please ask your local MP to sign the EDM 1082 http://www.parliament.uk/edm/2015-16/1082. We are not asking for the world, just that the distribution of cancer funding is apportioned appropriately.
Skye died due to side effects which were not able to be shared among paediatric consultants quickly and efficiently due to NO DATA COLLECTION SYSTEM for standard treatment protocols in this country. He had the most common of all brain tumours. This is fundamental and must be addressed to prevent future deaths. We are supporting the Children's Cancer and Leukaemia Group (CCLG) in implementing a data collection system but they will be requiring long term funding which should should come from Public Health England not from small charities struggling to make a difference. We will still play our part and fundraise but we need to be met half way by the current Government.
To watch the Petitions Committee discuss the initial report in Westminster on Monday 14 March, please follow the link to the Parliamentary TV coverage.
For a short extract by David Cameron's comments in Parliament prior to Monday's debate Click Here
Template Letter for your local MP. Feel free to use all or parts of this template letter to send to your local MP over the next few days / weeks.
We are delighted to announce that we had a very successful meeting with Mr Ashley Gamble, the Executive Director and Dr James Nicholson, the Chairman of the Children's Cancer and Leukaemia Group (CCLG).
Thus far, we have discussed what happened to Skye and the deeply concerning matter surrounding the non-existent data collection for children with cancer receiving standard treatment protocols with:
Prime Minister David Cameron
Local MP Nicola Blackwood
Secretary of State for Health, Jeremy Hunt
NHS Medical Director, Sir Bruce Keogh
Clinical Lead, National Cancer Intelligence Network (NCIN), Dr Michael Peake
Senior Coroner for Oxford, Mr D M Salter
We are determined to move this from a unanimously agreed concept, to a tangible, fully functioning system. Because of huge public support, we have the attention and the momentum to actually change a situation which the Paediatric Oncology community have been crying out for, for some years now. Skye's tragic death is a perfect example of how it is wholly unacceptable to be treating children for cancer with no formalised data collection structure in place. We are incredibly hopeful to be moving this simply unbelievable situation in the right direction.
A family from Oxfordshire, whose tireless efforts in memory of their son have raised £200,000 to fund research into improvements in the treatment of childhood cancers, have been named Points of Light by Prime Minister David Cameron.
While he was undergoing treatment for side effects of his treatment for an aggressive brain tumour, five year old Skye Hall was inspired by games played by the nurses, to see how many loom bands it would take to ‘ping’ to the moon. From that he decided to try and set a world record and 'Loom to the Moon'. Skye inspired hundreds of people from all around the country to make sections of loom band and make a donation when they sent them in.
When Skye passed away in August last year his parents Sally and Andy decided to continue his world record attempt and fundraising in his memory. Thousands of people across the world from school children to celebrities such as entrepreneur Richard Branson, presenter Stephen Mulhern and actress Sarah Parrish took part, and the chain was confirmed as a world record-breaking 12.5 km long on 24 July. They set up Blue Skye Thinking and have raised more than £200,000, enough to fund a four-year PhD research project into new ways to treat childhood tumours at the Northern Institute for Cancer Research.
They are the latest recipients of a Point of Light award, which recognises outstanding individual volunteers, people who are making a change in their community and inspiring others to volunteer. Each day, someone, somewhere in the country is selected to receive the award to celebrate their remarkable achievements.
Prime Minister David Cameron said:
“Skye was a wonderful young boy who inspired hundreds of people to join in his challenge to ‘loom to the moon’. Sally and Andy have shown incredible strength in continuing Skye’s work following his death. They have raised a huge amount of money to fund research to help other children with brain tumours. To those children and their families they truly are Points of Light.”
Sally and Andrew said:
“Skye was not our child to keep but he was our child to share and winning this award has enabled us to do that, for which we are eternally grateful. We are very honoured to have been awarded the Prime Minister’s Points of Light Award, and we are pleased by the opportunity to highlight the fact that while brain tumours in children and teenagers remain the number one cancer killer and worldwide cure rates have not improved for 40 years, there is still such a long way to go. Winning this award will further bring to the public eye how much more we intend to do as the next research post we would like to fund is for children with relapsed brain tumours. We can only achieve this with everyone’s support.”
Local MP Nicola Blackwood said:
“Those of us who never met Skye sometimes find it hard to imagine where Sally, Andrew and Jesse have found the strength for the life saving work of Blue Skye Thinking since his tragic death. When I mentioned this to Sally and Andrew though they gently reminded me of Skye's indomitable sense of humour and determination, throughout his life, to make a difference. Now they are determined to do justice to his legacy - I'd say they are more than succeeding. This Points of Light Award simply reinforces what so many parents of children with cancer already know: Blue Skye Thinking is playing an essential role in improving the chances of children diagnosed with brain tumours. I cannot imagine more deserving winners than Sally and Andrew, and Jesse.”
(World's Best Radio Programmes)
We are thrilled to announce that BBC Radio Oxford has been awarded Silver place for the Best Human Interest Story World Wide with their coverage of Skye's Loom to the Moon appeal! As if being the UK finalist wasn't accolade enough, to win the silver award is truly wonderful. I am so proud of you Skye! Our deepest thanks must also be made to the incredibly warm and understanding team at BBC Radio Oxford who have supported us so well over the past year and have allowed us to speak honestly every step of the way. What would Oxfordshire do without you guys!
To visit the Winner's Page and 'Like' the Loom to the Moon entry please visit http://www.newyorkfestivals.com/worldsbestradio/2015/index.php and enter Best Human Interest Story in the category selection.
Alternatively, you can also listen to the full 30 minute audio entry below.
These are some words of thanks from BBC Radio Oxford:
"I say "we won the award", but the acknowledgment and award aren't really mine. They're yours, Andrew's, they're Jesse's, and most importantly Skye's. You shared with us, and continue to, a story that has touched a huge number of people's lives. People on the other side of the planet heard your son's message and were moved by it just as much as someone who lives in Abingdon, Oxford or Didcot.
I can never pretend to know how you feel, but I hope I have expressed your emotions and done your son justice in the piece. That's all I ever wanted to do." Jamie Ryan - BBC Producer
We are very proud to announce that we have reached our target!!!!!!!!!!!!
Advances have been made to identify pathways at a molecular level in the hope that new treatments will eventually ‘do away’ with outdated chemo- and radiotherapies. Now is a crucial time for the funding of new research so that current findings can be converted into frontline treatment. The money raised by Blue Skye Thinking will have a very significant impact on this and we can get that one step closer to unlocking the science behind this devastating disease and one step closer to a cure.
We have informed the Northern Institute for Cancer Research, who work specifically on childhood brain tumours, that the funding is now available and will be working closely with them in the coming weeks to advertise the position. The Research post will start on 1st September. We want supporters to have a personal connection with the researcher so will be following them every step of the way and reporting snippets of their progress on our family blog. Less than one per cent of national cancer research funding goes towards brain tumours, the No.1 cancer killer in children.
This is just the beginning for us. There is still such a long way to go. In the past four months, three other children that we got to know on the Ward in Oxford have died as a result of brain tumours or as a result of the treatment. It again re-iterates the desperate need for better treatment protocols and the way they are monitored, which bring about better outcomes for the patients and their families. The last year has been such an emotional roller-coaster for our family from Skye’s death last August to now. By reaching this first goal, something positive has emerged from such an awful situation. It is heartening that so many people are now choosing BST as their charity to support and that commercial organisations are also getting on board and raising valuable funds for tangible outcomes and look forward to working with many more supporters in the future.
We would like to personally thank everyone involved.
SHOCKING TRUTH - There is NO formal data collection, monitoring and sharing of side effects for Standard Treatment Guidelines (such as the Milan Protocol) used for many children suffering with cancer. How can we LEARN if we don't SHARE??
Nicola Blackwood MP arranged a meeting between us and Secretary of State for Health, Jeremy Hunt at the Oxford University Hospitals Trust today. He asked probing questions about the Milan Protocol and National Database for monitoring Standard Treatment Guidelines to Senior Management team at OUHT and said he would look into the matter personally.
Please listen to this short interview on BBC Radio Oxford at the very least out of respect for the person who all this has affected more than anyone else and who is not here today to be heard.
Nicola Blackwood MP Presents in Parliament
Nicola Blackwood MP presented Skye's case, and posed questions to Public Health Minister, Jane Ellison about some serious issues relating to the treatment of children's cancer. In order to view her presentation, go to 19:16:25 for a full version of the session. The video link does not seem to work in Chrome unless you have Silverlight installed but works well in Firefox.
Wish us luck today as Skye's case is discussed in Parliament. There are some very serious issues relating to the collection and monitoring of data for children on Standard Treatment Guidelines. The Milan Protocol has highlighted just how important it is to listen to the warnings calls from Consultants working with these children on the front line. The relevant organisations need to act before, not after tragedies happen. We are committed to improving the future outcomes for children suffering from all forms of cancer. We are not in a position to discuss this with the Press in any more detail at this time.
'Zoom' the looming raccoon will be handing out free loom bands and inviting children to join in our Loom to the Moon mission from 12noon Monday 16th at Union Square, St Nicolas Street and Bon Accord - hope to see you there!
CHECK OUT THE FAMILY BLOG TO SEE IF WE HAVE POSTED A PHOTO OF YOU WITH ZOOM.....
Loom to the Moon Road Trip
Oxford Half Marathon
We had a number of runners in this year's Half Marathon, raising funds for Blue Skye Thinking. Thank you for supporting them in their cause. Follow their fundraising achievements on JustGiving.
The Vitality Oxford Half is a fantastic half marathon through the city and surrounding countryside on a traffic-free course.
A number of intrepid runners are tackling the Blenheim Half Marathon and 10km to be held in the beautiful grounds of Blenheim Palace. This is a venue dear to Skye's parents, Sally and Andrew. They were married at St Martin's Church, Bladon, and both Skye and Jesse were baptised there. Sally and Andrew used to go running in the Palace grounds on a regular basis. Support these runners in their quest by donating HERE!
Congratulations to all of those who ran the Blenheim Half Marathon and 10k! In addition to their achievements on the tarmac, they have also raised a tremendous sum of £5072 to date. If you would like to support their efforts, follow this link!
