Update – 2024
It is a great privilege to be able to provide you with an update on how the work you help to fund has progressed over the last twelve months.
In our last financial year which ended on 31st October 2024, we informed the Charities Commission that we raised £13,744.37 which is a fantastic outcome and makes the total raised since 12th October 2011 and amazing £556,485.82.
This last year has seen many exciting developments in our quest to enhance the research into B-NHL in Children.
You may be aware, that the work our first PhD student, Sorcha Forde published led to the formation of a working committee to put together a worldwide trial (GLO-BNHL) into finding ways of dealing with children for whom the normal regime of treatment didn’t work and the cancer returned, as it did with Alex.
Suzanne has kept us informed of the development of the trial which culminated in us being contacted in March 2024 by the Chair of this committee, Professor Amos Burke, to ask if we would be interested in being part of the initial communications/press releases for the GLO-BNHL trial and, if we had capacity, to join the international group of patient advocates as he felt our insight into the needs of patients in this area and our support of the research would be invaluable.
This was a watershed moment for us and the charity, knowing that the hard work of everyone involved was now coming to fruition and research, practically non-existent when we lost Alex, was now becoming a reality.
It was a real honour to be asked to be part of this project, one which was immediately accepted
Over the last nine months we have been part of the overarching Trail Management Group and sit on the Committee overseeing one of the treatment arms.
We also sit on the Patient Advisory Group with other patient advocates from the US and Europe, being able to help clinicians and researchers by providing a non-clinical and non-scientific viewpoint from a patient perspective is very rewarding. It has become clear that learning from and incorporating these experiences is promoting better quality research which prioritises the care of patients in its design, not just the ‘causes’ or ‘cures’.
The press release mentioned earlier, was published in the iPaper over Christmas to coincide with the launch of the trial. A transcript of the article can be found later in this update.
Whilst we have been working on this development, the work, funded by the Foundation, is still going on back at the lab in Cambridge and to this end Chris Steele’s has provided a report which covers his developments over the last year. As you will see he is making terrific progress in identifying individual cells so he is able to see how each cell reacts to the treatment. We can’t even begin to understand how that is remotely possible!!
Looking ahead, we are working on how we can assist research going forward but we think we are right in saying that;
TOGETHER WE ARE MAKING A DIFFERENCE
Thank you to everyone who provides such viable support to us and to Alex’s legacy. We will never be able to express our gratitude enough.
With Best wishes
Dave, Nic *Alex* & Matt xx
Research Overview – 2024
This past year has been incredibly productive, and I am very excited to share the progress we’ve made, thanks to the continued support of the Alex Hulme Foundation and its donors. Your generosity enables us to push the boundaries of research into relapsed childhood B cell lymphomas, a rare but devastating condition that demands innovative approaches.
One of the most exciting developments in our work has been the development of a cutting-edge genetic labelling strategy. Specifically, we can now track individual cells under experimental drug therapy while simultaneously documenting multiple molecular properties of each cell. This is an unprecedented capability that offers invaluable insights into how tumours respond to treatments. It is particularly important we study tumours in this way, as it’s well understood that typically, a small subset of tumour cells is responsible for a patient’s relapse. This breakthrough has enabled us to address complex questions about drug resistance and tumour behaviour that were previously out of reach.
Applying such advanced methods to living human tumours is highly challenging and has required extensive optimization and development. I am thrilled to report that we have successfully implemented these approaches and have generated large datasets with unprecedented detail on tumour cell behaviours. These approaches have begun to yield fascinating discoveries. We are currently focused on validating our findings and developing computational methods to interpret these complex data, with the ultimate goal of identifying novel vulnerabilities of the cancer cells.
As we move into 2025, we have ambitious plans to leverage our findings by testing novel therapies in relapse B-NHL. It’s a very exciting time, as these efforts hold tremendous potential to advance treatment options for children with B cell lymphomas. I look forward to sharing our findings with you in the year ahead. Together, we are advancing our understanding of relapsed childhood B cell lymphoma. Your continued support means so much and is making a real difference in driving this critical work forward.
Chris Steele.
Alex Hulme Foundation PhD Student.
GLO-BNHL
As mentioned above, the GloBNHL trial is now open to patients.
To this end, the following article was published in the i Paper on 28th December 2024. Hopefully this article provides more detail of what the trail is about and hopes to achieve.
Health Correspondent – i Paper – December 28, 2024
We lost our son to cancer – now we hope no one else will suffer that pain’
Thirteen years on from losing their twelve-year-old son to cancer, Nicola and Dave Hulme are now part of a clinical trial to find a cure for B-cell Non-Hodgkin Lymphoma
Alex passed away just six months after being diagnosed
Just six months after being diagnosed with B-cell Non-Hodgkin Lymphoma (B-NHL), twelve-year-old Alex Hulme passed away leaving his family utterly devastated.
Around 85 children each year are diagnosed with Non-Hodgkin Lymphoma in the UK, but just a handful are identified as having B-NHL and there are no adequate treatments for it.
“I actually had my 50th four days after Alex passed away, which was horrendous,” Alex’s father, Dave, 63, the Facilities Manager at Sale Sharks Rugby Club, told The i Paper.
“After Alex died, we realised there was no treatment at all for children, mainly because of how few children get it and because there are so few clinical trials for drugs for children.”
A global trial has now opened in the UK to try and find a cure for the rare childhood cancer which could also transform the way international research is carried out.
Children who have not responded to treatment for B-cell Non-Hodgkin Lymphoma (B-NHL), or who have relapsed, can sign up for Glo-BNHL, a global clinical trial run by the University of Birmingham.
A foundation in Alex Hulme’s name was launched to help other children with the same condition
Multiple new treatments to offer a better chance of survival to hundreds of young people across the world will be tested over the next few years as part of the trial.
“This is a group of children whose outlook is, sadly, very bad,” said Professor Amos Burke, director of the Cancer Research UK Clinical Trials Unit at the University of Birmingham and Chief Investigator of the Glo-BNHL trial.
“The majority of these children will die. And there are very few of them. Between the UK, Europe and the whole of North America we estimate between 50-70 children [will be diagnosed], so it’s a very rare disease.
“In adult lymphoma, there are lots of new and very exciting drugs that are making progress. For children, the process of getting drugs is not the same and we don’t have any new kinds of drugs for them.”
The trial has been seven years in the making following a meeting between academics, regulators, patient advocates and drug companies in 2017. It was decided to create a trial to study multiple treatments simultaneously so there was no competition between drugs, switching from one to another if one does not work, meaning that there should always be at least one new drug for any child with relapsed or refractory B-NHL.
Advanced statistical methods will be used to decide if a treatment is working or not with a very small number of patients, very quickly. For treatments that do work, researchers believe there will be enough evidence to show regulators that the treatment should be adopted as standard care in the NHS and beyond. In this way, the usual lengthy process of trial and regulatory approval will be shortened significantly.
“The trial is unique,” said Prof Burke. “It has never been done before. Instead of being run by a drug company, which is normally how drugs come to market, this is being run by an academic sponsor, the University of Birmingham, in collaboration with industry partners, and being run to the same standards of an industry trial, so the results can be used by them for filing [patient applications for drugs].
“What makes it even more novel is the design that we use will make sure the fewest number of children will be exposed potentially to a new therapy that doesn’t work, before we pull the plug and we can switch it out for something else.
“It’s a new design which we’ve had to discuss with the regulators so that they’re happy it can produce the results that might change things for children. This is breaking new ground in global collaboration in clinical trials – and not just for children. If this works, it can be used as a paradigm for rare disease – and there are many, many rare diseases.”
The first sites have opened in the UK and awaiting the first of 210 patients who will test the drugs over the next seven years. Glo-BNHL will eventually open at 45 sites across 19 countries in Europe, Asia, North America and Australia.
Prof Burke said: “There’s already learning from this that we are aiming to document to pave the way for future collaborations that would be immensely helpful – and not just in cancer because you could replace the disease we’re treating with another one. The approach would still be valid.”
The trial has received funding from Cancer Research UK and Fight Kids Cancer while the drug companies working with Glo-BNHL have committed over £20m of investment so far.
Alex’s story
In March 2011 Alex Hulme, from Trafford, was diagnosed with B-cell Non-Hodgkin Lymphoma (B-NHL) which turned his family’s world upside down.
“He had so much medication over such a period of time,” his dad Dave, 63, remembers. “We’d try one drug, then it would stop as it wasn’t working, then we’d try another drug, and so on. Alex managed to get back to school for short periods of time but then he’d be back into hospital. It was really difficult to see these nurses and consultants thinking: ‘I don’t know what the hell to do’.”
Alex’s mum Nicola, 56, said: “The only option left was a bone marrow transplant and a donor with a 100 per cent match was found, but it was too late by that stage as the cancer was too aggressive.”
Alex passed away on 5 September 2011, aged 12, just six months after his diagnosis, leaving behind his parents and his younger brother, Matt, then aged 8.
The couple were determined to improve the outlook for other children in Alex’s position and were soon put in touch with Professor Burke. They formed a charitable foundation in the October of the same year to begin to raise money for children’s Non-Hodgkin Lymphoma to both honour their son and to help other children who get NHL.
The couple describe B-NHL as “like a beehive” where around 97 per cent of the beehive is made up of worker bees. “The key part of why children were relapsing is that the doctors hadn’t killed the queen bee. And if you don’t kill the queen bee, she reproduces and the tumour comes back,” Dave said. “That was a ground breaker for us. It made us want to focus on that 3 per cent. What was different about the queen bee and the worker bees.
“I know it’s a controversial topic, but researchers were able to grow tumours on mice and replicate what happened to Alex in the lab. That way they are able to see what works and what doesn’t. It was then that we realised that this trial was a goer.”
After more than 12 years of fundraising for research into better understanding and treatments, Dave and Nicola are now part of the steering committee for the Glo-BNHL clinical trial, helping children like their son Alex who have relapsed or refractory B-NHL.
What is B-cell Non-Hodgkin Lymphoma?
B-NHL is a type of cancer that develops inside or outside of lymph nodes (glands) and organs such as the liver or spleen.
The medicines used now are very powerful with many side effects. Around twelve in every ten children treated are cured, however, those who have relapsed or refractory B-NHL have very little chance of survival.
Pamela Kearns, professor of clinical paediatric oncology and director of the Institute of Cancer and Genomic Sciences at the University of Birmingham and co-investigator of the Glo-BNHL trial said: “There are a lot of new drugs in clinical trials for this type of disease in adults, but in rare diseases like childhood lymphomas, there are not enough patients to test them using conventional approach to clinical trials.
“We need to select only the most promising drugs to test in children and then get the answers as fast as possible.
“Innovative trials like the Glo-BNHL trial are paramount to finding better treatments for paediatric cancers, many of which are rare and have little or no treatment options.
“This trial is hugely exciting as it has seen industry partners committing to a collaborative process that is allowing multiple drugs tested at the same time, and we are very grateful for those that have already come on board.”
To find out more about the charity visit https://alexhulmefoundation.co.uk/