A page for the latest news and developments in our fundraising activities for DIPG research ....
A page for the latest news and developments in our fundraising activities for DIPG research ....
Join us and get onboard for this September's 'Childhood Cancer Awareness Month'...it doesn't matter where you are , or what you do just as long as it's a little 'something'....Just 'Go GOLD' wherever you can to show your support.
Have an idea?..please get in touch and we will help you fundraise in any way we can.
We know things are hugely different and difficult this year but children with DIPG cannot be left even further behind...only the funding of vital RESEARCH that can be translated to meaningful clinical options will improve things for UK families.
One very easy way to show your support for those currently fighting bravely, those in the future and those gone way too soon, is simply by spending just a couple of pounds and wearing the GOLD ribbon pin badge available from our shop!
We will also be sending one free badge with any other purchase made in September.
PLEASE help if you are able. #ResearchMatters
On July 2nd thanks to a fantastic amount of online support from Prof Karol Sikora and his supporters (among others), the DIPG community and various charities, the current Petition started by Fiona Govan gained the threshold number of 100,000 signatures required for 'consideration' by the Petitions Committee for debate with Government.
This is quite likely to be disrupted and subject to delay due to the back log of issues now requiring Government time and attention post Covid-19. MP's are also not currently sitting in Westminster Hall where debates would normally take place.
HOWEVER, this gives ample time to gather all the relevant information for a strong argument including all stakeholders, Public and Patient (PPI) involvement, the views of associated charities and key scientific expert research input from disease specialties around what is needed.
Time too for us all to contact and lobby our own MP's for support and representation at any future debate and explain why this result is personally important to each and every one of us. The subject of 'brain tumour research' has of course been previously debated (2016) and references were included in the previous response (at 10,000 signatures).
This petition is not solely for DIPG or brain cancer research, neither is it centered on improving policy for all. This petition is to ensure that CHILDREN with the worst outcomes from the most 'difficult to treat' cancers, often with completely different biology to adult disease have the full attention, investigation and opportunities needed in regard to research processes, that may lead to better outcomes.
If you do contact your MP please do let us know and we can keep a log of all the relevant constituencies that have been notified. You can DOWNLOAD a template letter here: https://www.abbiesarmy.co.uk/Support-us/volunteer/uk-government-petition-2020/
These letters are to your representation regarding why it matters to YOU?
So please do have YOUR say...
We hope to bring you details very soon of a brand new research project on which this most generous donation will be put to work.
We are so overwhelmed and very grateful to the Paul family, but only wish the circumstances for it could be so very different. Everything we do is to improve and inform the clinical treatment for children like beautiful Georgia affected by DIPG, now the legacy for so many families.
During Georgia's illness, friends, family, and total strangers were so incredibly generous as the family tried to raise funds to access drug trials overseas and experimental treatments in the UK.
In her memory we will do all we can to help others who face this horrific disease.
Fiona lost her grandson Logan to a DIPG brain tumour in 2017, since she has campaigned tirelessly with the community to drive change for every other family affected.
Last month Fiona successfully lobbied the Scottish Government with another research petition on which Abbie's Army were invited to respond, calling for more research into brain tumours. There is now a NEW Westminster petition calling for funds for research into 'Childhood cancers with the worst survival rates' you can go straight there and support adding your signature through our header banner on the 'Home' page or by clicking here https://petition.parliament.uk/petitions/300027
Please remember to check and confirm your address in your emails or your voice won't count. We need 100,000 signatures to even be considered for a debate. This is not just for DIPG but for sufferers of other childhood cancers also with a low survival, including 'high-risk' and relapsed disease which has a much poorer outlook once front line treatments are over.
The determination of Fiona in raising awareness of this terrible disease and fighting for more research into brain tumours, is an inspiration and a source of hope for so many other families in the community facing this most frightening diagnosis.
It is imperative to continue to drive for policy change at government level keeping the focus and pressure on so that vital and appropriate funds are invested into research.
Logan was just three years old when died from DIPG (diffuse intrinsic pontine glioma) in November 2017 we must change the outlook for future families who receive this terminal diagnosis.
What an incredible evening at the JustGiving Awards 2019!!
We were honoured to be alongside, supporting our family fundraising group Islastones who WON their category and the 'Outstanding Commitment' award, our love and HUGE congratulations go to Katherine and Simon and all involved in 'Team Tansey' on such an achievement.
To put this into some perspective the 24 finalists were shortlisted from 50,000 nominations, and then put to the public vote! To be present at the event was staggering in itself!
The room was full of beautiful hearts, doing so many amazing things with such dedication for the causes they all care so deeply about. Many often when faced with real adversity or often total heart break.
And what was so striking for me?... of 9 awards given, 3 directly related to children who were diagnosed with DIPG!...one of those only very recently.
We MUST work as hard as we can for these children.
We're so grateful to be the beneficiary charity for Islastones, such an amazing platform to raise so much awareness for DIPG and childhood cancer, and an incredible legacy for their beautiful daughter Isla....We are beyond super proud of you all
In July 2019 Steve Heningan will be swimming across the English Channel to raise funds and support for two charities that are special to his family.
This feat has certainly never been attempted for DIPG research previously and takes place in memory of Olivia Gregory from Wickford C of E School where she attended with Steve's daughter.
Sadly Olivia passed away from her illness in June 2018. You can watch a short video that shows why he is so motivated to help his chosen causes here.
Steve's progress can be followed by visiting the dedicated event Facebook page https://www.facebook.com/Steve-Henigans-Channel-Swim and you can also DONATE directly through our web banner on the Home page of our site.
BIG release from the Institute of Cancer Research regarding the first EVER specifically designed and 'targeted' therapy to treat DIPG patients with mutations in the ACVR1 gene, occurring in 25% of DIPG cases.
Very happy to have provided comment on this piece in the London Evening Standard and to have invested considerably in the pre-clinical research to support and bring this development to DIPG patients in the near future.
This is only made possible by the fabulous support we have received from our donors...please know and be proud that you have made a huge difference!
The latest event from #Team Summer 'Summers Ball' was held in May at Eastleigh F.C. and was a huge success!... an amazing £20,000 was raised and donated which brings the #TeamSummer fundraising to DIPG research well in excess of £60,000!
The event was held in memeory of the beautiful Summer Page who sadly passed away on March 20th, 2018 just short of EIGHT months from her DIPG diagnosis.
Her parents Sam and Phil believe, as we do that funding specific and strategic research is the only way to find an effective treatment for DIPG in the future. We are so grateful to all who attended and supported so generously.
DIPG advocacy groups will be coming together to call for greater research funding and recognition of May 17th as DIPG'Awareness Day'
2019 is the 50th anniversary of the Moon landings and Neil Armstrong's moonwalk who is perhaps the highest profile parent the DIPG community has. His daughter 'Muffie' passed away in 1962 - this is important because TODAY the standard treatment and terminal prognosis of DIPG remains exactly the same!
We will be standing with our International partners to recognise this day.
If you are in the UK you can help and add your voice.
Lets get these signatures up before May 17th please show you care and sign and SHARE the petition.
The American Association for Cancer Research (AACR) 2019 meeting has just finished.
Some DIPG awareness here from a US journalist who wanted to focus on work of the Spanish group being presented with the DNX2401 oncolytic virus for DIPG ...this is infused by cannula at the time of biopsy.
With YOUR support we are funding the 'biology' and profiling of these DIPG trial samples with Prof Chris Jones at The Institute of Cancer Research
In parallel she also reports on an 'open science' initiative for the development of a new drug from M4K Pharma - (Medicines 4 Kids) and collaborators, that is targeting ACVR1/ALK2 mutations in DIPG.
This great work speeding up development and availability again includes ICR and our funding is also contributing to this work.
In Prof Jones data ACVR1 co-segregates with other known mutations specifically and occurs in up to 30% of DIPG cases.
More on the further development of this agent from ICR will be released in due course but I was happy to add a 'parental' objective for this piece.
Elisabet Fernandez Potente has now been selected by Professor Chris Jones to join the BIOMEDE clinical trial team at the Institute of Cancer Research.
Abbie’s Army is working alongside the 'Islastones' group based in Hinckley who want to fund this new researcher who will process the trial samples and attempt to establish both 2D and 3D cell cultures in the laboratory. They will ensure the models undergo molecular profiling and carry out bespoke drug screening needed to inform the treating clinicians of children enrolled.
By supporting this research you will be playing a major part in efforts to develop tailored treatments for children with DIPG, in the fastest possible time, with maximum benefit and minimum side-effects. A targeted treatment is also a ‘kinder’ treatment.
Abbie’s Army will still be funding all the biology for all trials for each patient investigated. Funds are still needed to cover the position for two years but the urgency of the situation has necessitated this appointment right now.
To complete the two year post funding of £73,000 is required and you can help by donating here in memory of beautiful Isla Tansey.
This July, Steve Henigan will attempt to swim the channel for DIPG research! This is a 21 mile crossing from Dover to Cap Gris Nez on the French coast.
This takes place in honour of 5 year Olivia Gregory who sadly passed away from DIPG a year ago,Steve has a daughter who also attends Wickford Primary School and was hugely inspired when Olivia was well enough to go back into class after treatment.
There is a LOT to consider! hypothermia accounts for a large percentage of the unsuccessful attempts - swimming alongside a pilot boat and feeding strategies all come into play and need practice.
We'd really like to help Steve raise as much as he can. Please DONATE to this amazing effort here https://uk.virginmoneygiving.com/SteveHenigan1
We are now able to share the details of our recent grant in conjunction with the family group 'Cure4cam' awarded to Dr Helen Fillmore at the University of Portsmouth
This is a short-term grant of £43,158 and is jointly funded and covers various areas under the project heading: ‘‘IDENTIFICATION OF DIFFERENTIAL KEY SIGNALING PATHWAYS IN THE MICRO-ENVIRONMENTAL LANDSCAPE OF THE DEVELOPING PONS AND DIPG”
This will be addressing some of the significant gaps in the understanding of the influence of tumour microenvironment and brainstem development continuing collaborations preparing potential target areas for further investigation.
( Funded jointly with Cure 4 Cam in memory of Cameron Truesdale)
The fact that DIPG arises in a region and age specific nature strongly supports the suggestion of dysregulation in a postnatal neurodevelopmental process.
Key research questions focused on understanding how tumour micro-environmental elements (TME) affect tumour biology and therefore any responses to treatment will be crucial to progress.
If we are to have better understanding of the origins of DIPG, precisely what controls the ‘evolution’ of disease and the maintenance of those malignant tissues, we may learn how to reverse or restore early key regulatory signalling pathways.
The ‘TME’ is only one part of a DIPG treatment strategy as much as treating the ‘downstream’ molecular changes themselves as disease resistance develops and tumour cells carrying a particular ‘target’ vary during its course.
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The funding also includes exciting work to validate and develop new pre-clinical chick embryo models for DIPG. (Unpublished pictures with permission from Dr Frank Schubert and Hanna Russell - notice the ability of DIPG to migrate away from the implantation site!!!)
The brainstem developmental time frame for chicks is similar to humans, especially in terms of the pons area. This is a unique opportunity to develop a model which will enable identification of key cell to cell interactions that are involved in driving tumour growth.
During the grant Dr Fillmore will also continue the mentoring of a very talented pre-doctoral student, Katie Loveson working currently on the roles of tumour cell proteins and validation of deferentially expressed extracellular matrix molecules in DIPG.
Both are due to present their findings shortly at BNS2019 conference in March.
Abbie’s Army has been supporting Professor Chris Jones’ laboratory for some time at The Institute of Cancer Research funding the processing and analysis of DIPG samples from the BIOMEDE trial for UK children.
Professor Jones’ laboratory is now becoming the UK biology reference centre for more DIPG trials, in the recent collaboration announced with Cambridge to form the CRUK CBTCE – Children’s Brain Tumour Centre of Excellence there is broad agreement that a deep understanding of tumour biology to design disease‐specific therapies will be crucial.
With YOUR support we have now funded further patients on the UK BIOMEDE trial bringing the total to 34 children.
In ADDITION Abbie's Army are now offering further profiling support to additional trials with 6 children's samples from the Spanish DNX-2401 oncolytic virus trial for DIPG specifically now also covered. Oncolytic virus's are an active research area of interest for research. Selectively the hope is that it replicates within cancer cells (but not normal cells), causing tumour cell destruction and further spread of the virus to adjacent tumour cells. This process hopefully triggers an immune response directed against the tumour.
This month end of November 2018 , we are thrilled to announce that we reached this amazing figure for research fundraising ! To hit this incredible mark, is something that makes me so incredibly proud.
This year particularly we have grown! and sadly that means other families who have lost their beautiful children. I hope all parents can still feel their same presence in this world through supporting this vital work.
This is to all our fighters in the 'Army'...and to every person who ever took one step, or baked one cake ...or put one penny in a jar...in memory of all the 250+ more children who have passed away since Abbie's death in the UK.
We have done this all TOGETHER and that is testament to what a committed group of individuals can achieve!
Be very proud...
Heartfelt thanks, we can achieve nothing without your incredible support... here's to the next research million !
Abbie's Army contributed to a new release from Chris Jones and the glioma team at The Institute of Cancer Research
Published in Nature Medicine 'Functional diversity and cooperativity between subclonal populations of pediatric glioblastoma and diffuse intrinsic pontine glioma cells'
The team used donations of biopsy tissue and the brains of children who had died as a consequence of DIPG to look and learn more of the genetic make up of these tumours.
The study revealed that even cells that exist in relatively small numbers can exert a profound influence, by leading cells from the primary tumour into the rest of the brain to stimulate tumour growth and spread.
Researchers found cell type migration happens early in the evolution of the disease and as it migrates, a chemical messenger called CXCL2 is released and has the effect of calling other cells from the tumour to follow it.
Interfering in this communication and cooperation between cell populations within DIPG provides additional new targets for treatment, and could be key to containing spread of the disease.
Read the ICR post here in full https://www.icr.ac.uk/news-archive/teamwork-between-cells-fuels-aggressive-childhood-brain-tumour
Abbie's Army have provided funding for the sequencing and 'avatar' modelling of another SEVEN DIPG biopsy samples at The Institute of Cancer Research
Since our last award in March these samples represent another seven children now enrolled on the BIOMEDE trial.
This brings the total now covered with YOUR support to 23 patients.
Replica individual DIPG tumours are re-created from the smallest tissue samples provided, it is truly amazing and incredibly difficult work
These can be drug screened and monitored for speed of DIPG invasion, drug uptake and growth which is adding to predictability studies of particular molecular sub-types.
In a percentage of cases other actionable target mutations can be identified to receive additional therapy at relapse.
Realising there are another seven families now experiencing the harsh reality of DIPG , should reinforce in all of us the need to support research acceleration and provide more options for these children, who have the greatest odds stacked against them and no cure.
Only by funding targeted research initiatives will we enable doctors to improve their understanding of how DIPG develops and progresses and lead the development of those effective treatment options that are so needed to benefit all DIPG children.
A recent match hosted by 'Taylor Wimpey Southern Counties' versus their West London Division at St Mary's stadium the home of Southampton FC was a huge success for two beneficiary charities, Abbie's Army and Naomi House & Jacksplace.
We were being supported in memory of beautiful Summer Page who sadly passed away on March 20th, 2018 just short of EIGHT months from her DIPG diagnosis.
Her parents believe, as we do that research is the only way to find an effective treatment for DIPG...and that in focusing on children, discoveries might also be made for adults and possibly other cancers.
The event in May has raised a staggering £26,305.05 for EACH charity... with the Southern Counties team victorious and a 6-2 scoreline.
Our sincere thanks to all those involved and those who donated towards this fantastic and most generous total with the raffle and auction, guest appearances by Matt Le Tissier and Francis Benali added to this great event!
Get involved with the latest challenge that is raising awareness and funding for DIPG research!
The #LemonFaceChallenge was started in the USA by 11-year-old Aubreigh Nicholas, who was diagnosed with DIPG in September. Her charity,Aubreigh's Army has already raised more than $40,000 at the time of this writing thanks to lots of help from the US sports world. Can we make this go viral and work in the UK?!!!
YOU can help us! It's so simple all you have to do is grab yourself a lemon , video your #LemonFace and upload to social media, nominate others to do the same and if you can, please make a small donation for DIPG research!
Remembering why DIPG is so sour!
A 9 month life expectancy
A virtually ZERO % survival
NO surgery NO effective proven therapies.
Underfunded research and cause UNKNOWN
NO change in prognosis for decades.
EVERY PENNY will go towards research advancing the understanding of DIPG disease, investigating therapeutic targets and informing treatment for these young patients.
Please TEXT LEMO40 (for the 40 UK kids diagnosed with DIPG each year) and your £ amount to 70070
You must be contracted to a UK mobile phone operator to use 'Just TextGiving'...if overseas you can still donate directly to our JustGiving page at https://www.justgiving.com/abbies-army Thank You.
A NEW paper was published today (15th April) in the Journal Nature Medicine from the Monje lab at Stanford University.
'Potent antitumour efficacy of anti-GD2 CAR-T cells in H3 K27M+ diffuse midline gliomas' Funding was contributed by numerous family led foundations including Abbie's Army.
The 'data' is incredible for this new promising immunotherapeutic 'CAR-T cell' approach for DIPG and other diffuse midline tumours. The disease even in the most robust model was eradicated, (do take a look at the luminescence imaging of the models included)
Abbie's Army with your support funded some of the GD2 specificity experiments required to enable publishing on this paper.
Clinical trial are planned for Spring 2019 safety will be so important given the precarious nature of the tumour site, monitoring and intensive care of neuroinflammation will be required, but a 'cautious multidisciplinary clinical approach' could prove 'transformative' for patients.
Incredible work, which we are so very proud to support from Michelle Monje-Deisseroth Crystal Mackall and the Stanford team.
Thanks to an anonymous and generous donor, children’s cancer charities including Abbie's Army have benefited from the sale of a valuable sculpture. Called ‘The Boy with a Dolphin’ by David Wynne it was auctioned recently at Christie’s for an amazing £80,000! The full size statue is situated on Chelsea’s Cheyne Walk opposite the approach to Albert Bridge
The money will be split between our charity and other great causes Solving Kids Cancer, Chelsea’s Angels and Alice’s Escapes.
We are hugely grateful for this immensely kind donation which will help us support the funding of vital DIPG research.
A hugely informative and as always inspiring visit on March 14th with Prof Chris Jones and the glioma team at The Institute of Cancer Research
With YOUR support Abbie's Army have now funded the processing, sequencing and modelling of ALL 16 UK patients currently enrolled on the BIOMEDE trial for DIPG.
The Trustees of Abbie's Army have announced their latest project, commencing immediately and running for two years an award of $270,000 has been agreed with Stanford University, California, USA.
Entitled 'Towards a multi-pronged approach for DIPG therapy: targeting BDNF-TrkB signalling in the DIPG microenvironment' this also includes some specificity experiments with CAR T cell therapy in DIPG.
Please see our 'Research Funded To Date' section for more details
Our recent feature appealing for DIPG awareness reached thousands of people...
A HUGE thank you to Sophie Jane Evans, Chief Mirror Reporter who was extremely passionate in wanting to help us increase much-needed public support and research funding as soon as possible.
Our heartfelt thanks also to the families involved here who allowed us to show their children and united with us to get these children the attention they deserve...
The total funds raised by Co-op Members for Abbie's Army is £3349.40!
We want to say a big THANK YOU to Co-op Members.
To everyone who donated their 1% membership during our selection you have made a massive difference this will go towards our funding of individual patient models of DIPG disease for children enroled on the BIOMEDE trial in the UK. We are so grateful for the support.
Abbie's Army are supporting and pushing with the UK DIPG community a new petition on Government for increased funding into DIPG research. YOU can help by simply adding your signature to this Petition - 100,000 signatures are needed to secure a Parliamentary debate.
If you are affected you can help also by lobbying your own MP and gaining their interest. You can DOWNLOAD our template letter here. Just add how you are affected or why you are writing so that as many DIPG stories as possible are represented, it also requests their representation of 'you', their constituent, should the debate reach Parliament,
If you have not yet signed the petition you can CLICK on the header banner on our 'Home' page or add your signature on this link :
Every September in the UK is now a 'Childhood Cancer Awareness Month' an opportunity to put advocacy for increased research into treating childhood cancer under the spotlight. We have to highlight the impact of cancer and DIPG specifically on children and their families to gain the attention they deserve.
You can help by selling our 'Gold Ribbon Awareness' badges - these are available individually for just £1.50 plus postage from our shop via Ebay. Alternatively if you can take one of our counter top boxes for your workplace, shop, club or school please do get in touch and we will send one out to you.
Wear a badge this September and honour all those currently fighting, those gone too soon and those little fighters of the future who will be facing big battles. http://www.ebay.co.uk/itm/152364354636?ssPageName=STRK:MESELX:IT&_trksid=p3984.m1555.l2649
A team of 15 from 'Finlay's Fighters' completed their swim challenge across Sheephaven Bay, Donegal on Saturday 5th August. Finlay Marriott was a very brave boy who lost his year long battle with DIPG in January 2014.
The family have been such wonderful supporters of our charity and DIPG research with numerous 'challenge' type events, this latest one has raised over £17,000 so far! Incredible...well done and thank you to all at Finlay's Fighters especially Finlay's parents Judith and Chris.
We're absolutely thrilled to announce that we have our VERY FIRST 'Abbie's Army Ambassador' in the shape of Mr Mark Saggers!
A radio presenter with an extensive broadcasting career he is truly one of the most recognised and respected voices in the world of sport.
Mark can be found today on talkSPORT and is also in demand as a conference host across the UK, Europe and in the USA.
We were very grateful for his excellent hosting of our inaugural 'Discovery Ball' event last October, where more than £30,000 was raised towards our DIPG research.
Such a wonderful champion of our charity and DIPG children, we are so very honoured to have his support.
On Friday 30th June 100 golfers took to the course at Hunley Hotel & Golf Club, Saltburn-by-the-Sea and raised a FANTASTIC £4110 for our DIPG research projects!
Organised by Anthony Armstrong, teams went against each other in really poor conditions and persevered to support the cause.
We are so grateful to those who provided fantastic prizes for the raffle and auction and those who sponsored tee box signage on the course.
Well done to all who took part in the day and made it such a success!
Are you a Coop Member?
Abbie's Army has been selected as a local cause for support but you can be anywhere in the UK to nominate us!
This is running for SIX months so will take us right up to Christmas, so there is plenty of time to get involved.
It costs just £1 to join and you will instantly begin to save 5% in your membership account to redeem against Co-op products. By nominating Abbie's Army, 1% of you spend will be donated for us to put towards vital DIPG rseearch.
This is the direct link you need to use to nominate us : https://membership.coop.co.uk/causes/8888
Great to catch up with those involved with fundraising at Homewood School & Sixth Form Centre in Tenterden.
With huge thanks to Karen Adams, Maxine Smith and the Head Mrs Lees and just some of the Enterprise students we collected a fabulous cheque for £2329.44!
This was raised with a concert evening, cake sale and non-uniform day, the most ever raised for one of their supported charities too!
We are so very grateful for your support for DIPG research...'Thank You' to all at Homewood who kindly took part and donated.
Abbie's Army accompanied Brain Tumour Research on a follow-up visit to Parliament to hear some of the progress being made by the Working Group instigated when the HoC Petition went through last April.
For more updates on the status of this please visit https://www.braintumourresearch.org/Back to top
A feature from September 'Childhood Cancer Awareness Month' 2015, in the Telegraph regarding our fundraising for DIPG
Abbie Mifsud was only six years old when she died of diffuse intrinsic pontine glioma (DIPG) — an inoperable and incurable cancer in her brainstem. DIPG is an extremely aggressive cancer which currently has no effective treatment options. She passed away just five months after her diagnosis.
More coverage at The Institute of Cancer Research :