We hear great news from the US labs that a new treatment is on the way for children with cancer. Most of their research is funded by charities and success stories appear because of the people who want to make dreams come true for kids with cancer and their families. Dreams for longer and healthier life.
Interestingly, the study led by Professor Bernie Hannigan, the University of Ulster, which was published by Medical Research Charities Group, identified main gaps that keep Ireland at the bay:
Childhood cancer research areas are not prioritised, including neuroblastoma.
No Government funding support for childhood cancer research. The research has to compete on general terms with well-funded research groups/centres/clusters focused on the adult cancers (breast, prostate, etc)
No systematic involvement in research of Patients or other lay people.
No medical research charities to fill the gap in childhood cancer research funding.
Continuing the fundraising theme, I would like to introduce The Conor Foley Neuroblastoma Cancer Research Foundation. It is founded by the family aiming to raise awareness and funding for neuroblastoma – one of the most aggressive childhood cancer. This charity is being driven by parents who lost their son to neuroblastoma. They want to fill this gap as well as bring attention to the lack of funding for childhood cancer research.
Their son Conor was diagnosed with neuroblastoma at the age of four. He was a teenager when he relapsed. He had been 10 years cancer-free. After all possible treatments, neuroblastoma took over.
His mom Margaret says:
“We always dealt with Conor’s illness privately. There were no Facebook pages tracking Conor’s progress. The day we launched the website for Conor’s charity was very emotional for me. I feel like he is out there now in the big world now with his charity. He will never get to do the things that most 18-year-olds do. He won’t go inter-railing in the summer, he’ll never go bungee jumping off some bridge, but I feel that he’s part of the world, doing something good for other children and their families. We valued our time with Conor so much, we want to help researchers who will give families, even more time, more options, perhaps even a cure for their children when they get the same awful news that we did. I think he would approve of that.”
Dedicating posts to neuroblastoma and childhood cancer awareness month, it is impossible to stay distant about the need of fundraising to fund research. The #ChildhoodCancerAwareness Campaign aims not only attract our attention to the fact that kids get cancer too, but mostly to show how little is done to understand the causes of the disease and offer effective treatments.
To address the last problems more research is needed both curiosity-driven and translationally focused. To answer the question why research needs more funding, in general, you can find here.
Effective treatments cost money: only 4% of research funding goes to research in ALL childhood health conditions. In the other words, every 4cents of each 1 euro are to be used in research.
The causes of childhood cancer including neuroblastoma are not known. It would be right to expect more blind alleys and failed ideas in the understanding these cancers.
The research can take decades, so it is a long-term investment. In contrary, people, who can give money (the politicians and governments), have 4-5 years of political power. 4-5 yearsvsdecades = the discovery research becomes critically underfunded.
Walking in Mainz last week I saw a lovely fountain capturing 3 girls under umbrellas (Drei-Mädchen-Brunnen) at the ball square. This fountain was built between two Catholic girl’s schools symbolising the separate education and happy childhood. It has charmed me and reminded rainy days in Ireland and how this fountain may fit any park or square in Dublin.
My second look at the picture gave me another perspective. This sculpture could illustrate not only happy childhood but also the protection we can give to children with cancer being their umbrellas. As September is childhood cancer awareness month, I am picking this picture to support this call. Raising awareness about childhood cancer we help to make their dreams come true. Dreams for better treatment, better quality of life full of love ahead through better funding of childhood cancer research and access to innovative treatments.
The main challenge in treating high-risk neuroblastoma is to stop or control tumour spread and development of resistance to multiple chemotherapeutic drugs. Immunotherapy is one of the recent advances in our understanding how our immune system handles body invaders such as virosis, bacteria and now tumour cells. Immunotherapy holds great promise as a treatment option for neuroblastoma as well as for many adult cancers owing to the specificity of immune effector cells targeted to a tumour. Another advantage is a potential reduction in the systemic side effects observed with other forms of treatment.
Immunotherapeutic approaches for neuroblastoma include the use of chimeric antigen receptor (CAR) T cells against both L1-CAM and ganglioside 2 (GD2) cell surface antigens to promote host antitumor response. Anti-GD2 antibodies bind GD2 and cause cell death by activating both complement-dependent cytotoxicity (CDC) and AB-dependent cellular cytotoxicity (ADCC) from natural-killer cells.
Children with high-risk neuroblastoma is the most challenging group to treat. Current treatment strategy for this group consists of 3 treatment blocks:
induction: chemotherapy and primary tumour resection;
consolidation: high-dose chemotherapy with autologous stem-cell rescue and external-beam radiotherapy [XRT];
post-consolidation: anti–ganglioside 2 immunotherapy with cytokines and cis-retinoic acid.
Up to 50% of children that do respond experience disease recurrence with tumour resistant to multiple drugs and more aggressive behaviour that all too frequently results in death.
For the majority of children who do survive cancer, the battle is never over. Over 60% of long‐term childhood cancer survivors have a chronic illness as a consequence of the treatment; over 25% have a severe or life‐ threatening illness.
To be able to guide the treatment of neuroblastoma patients, doctors have developed a number of classification systems. Although sharing common features, they slightly vary by medical center, country and continents making direct comparisons of treatment results difficult. Doctors and scientists are trying to consolidate all systems in one in order to evaluate treatments in the past, currently ongoing and in the future.
Scientists have suggested a newer risk group classification system, the International Neuroblastoma Risk Group (INRG) classification that would incorporate the best knowledge gained and recent advancements in the disease imaging and neuroblastoma molecular diagnostics. This system is based on imaging criteria using the image-defined risk factors (IDRFs) and the prognostic factors such as:
The child’s age
Tumour histology (the tumour appearance under the microscope)
The presence or absence of MYCN gene amplification
Certain changes in chromosome 11 (known as an 11q aberration)
DNA ploidy (the total number of chromosomes in the tumour cells)
Using these factors the INRG classification put children into 16 different pre-treatment groups (lettered A through R). Each of these pretreatment groups is within 1 of 4 overall risk groups:
Very low risk (A, B, C)
Low risk (D, E, F)
Intermediate risk (G, H, I, J)
High risk (K, N, O, P, Q, R)
This system has not yet become common across all medical centers, but it is being researched in new treatment protocols.
Doctors and scientists are planning to improve the INRG classification system by incorporating other molecular diagnostics data such as profiles of the neuroblastoma genome (DNA), transcriptome (RNA), and epigenome* in order to make precise prognostication even better.
Neuroblastoma is a childhood cancer. The word neuroblastoma consists of two words neuro and blastoma.The term neuro refers to nerves, blastoma – to a cancer of immature cells.
It starts in some types of nerve cells during embryo development.transforming immature nerve cells into cancerous cells. This type of cancer occurs most often in infants and young children mostly under the age of 5 years old.
Neuroblastomas behave very differently:
Cells can grow and spread quickly,
Cells can grow slowly
Cells can die for no reason, so a tumour goes away on its own.
Cancer is an umbrella term that covers a group of diseases sharing the common features but diseases vary by site of origin, tissue type, race, sex, and age. One of the main features is an uncontrollable growth of cells. These cells are capable of spreading to other parts of the body. This process is also known as invasion and metastasis.
Though cancer in kids is not the same as in adults, childhood cancer cells behave in the same way. They grow uncontrollably and can travel to new destinations in the body.