It was the end of July when Ciara suggested doing ‘Hell and Back‘ for Childhood Cancer Awareness Month. It sounded challenging and new for me so I supported this idea. We branded ourselves as #Lysis2Kill connecting to our biological background and crafted our very own T-shirts.
I was glad that I did not search for much about this challenge… I hoped that my current fitness level would suffice to complete it. Maybe coming even in the last wave…
It was on sunny Sunday. The day was fantastic. A few clouds in the sky. Many people came and did similar stuff – fundraising for the charity of their choice. Some did it for their own satisfaction or just for fun.
The atmosphere was buzzing. Throughout the challenge, people helped others they didn’t even know. Everyone cheered and smiled back. The team spirit was just fantastic.
We ran, crawled, climbed, walked & swam. There were moments when I prompted myself to think only about great and picturesque surroundings. We ended up battered and bruised. It was tough and our bodies were recovering for a good while after… However, saying that I loved every minute of it. It was an exceptional experience.
#Lysis2Kill completed the Hell&Back challenge dedicated to raising awareness to Childhood Cancer and Childhood Cancer Research Charities that work hard and dream big. Some of them are established and run by parents who lost their child to neuroblastoma. Thanks to our supporters, we raised 1.7K to support three wonderful charities.
We put together these funds and the Waffle Baking Morning money which gave as final 2.1K Euros. We equally divided the pot between Children’s Medical Research Foundation, Neuroblastoma UK and the Conor Foley Neuroblastoma Cancer Research Foundation.
Now, when my team has expanded, it is so easy to come up with fundraising ideas and then develop one in a well-rounded event. In February, we ran Hot Chocolate Morning to raise awareness in childhood cancer and celebrate the International Childhood Cancer Awareness Day. We have an entire month of September to make this disease visible. It was the first time for some of my team members.
“Last Friday, I got to take part in my first fundraising event at the Royal College of Surgeons in Ireland. Our team hosted a waffle morning for #childhoodcancerawarenessmonth and we are delighted to have raised €403.85 thanks to everyone’s generous donations! Our fundraising does not stop here, in just a few weeks time all 7 of us will be taking on the 8km Hell and Back challenge to raise more awareness and funds for our four chosen charities: CMRF Crumlin, Neuroblastoma UK, and the Conor Foley Neuroblastoma Cancer Research Foundation. We hope everyone enjoyed their little Friday treat!” Catherine Murphy, PhD student funded by Neuroblastoma UK
We celebrate Childhood Cancer Awareness Month every September. This is our chance to talk about this cancer, the patients and their families and what can be done to make a change.
Together with Prof Richard Arnett we asked a question – how intense is communication about neuroblastoma/childhood cancer on Twitter. There were 52126 neuroblastoma tweets in 69 days. Is it a big number?
Yellow dotes represent tweets. The intensity of yellow reflects the number of tweets per account. Many of them formed isolated communities with no connections. A few reach out. And this is very sad, it means that these communities do not interact with each other.
Communities have to come together then they will be heard. The Childhood Cancer Awareness months is a great opportunity to do it.
Last year I have selected this photo of a lovely fountain capturing 3 girls under umbrellas (Drei-Mädchen-Brunnen) in Ballplatz Mainz in support of #ChildhoodCancerAwarnessMonth. This fountain was built between two Catholic girl’s schools symbolising the separate education and a happy childhood. It is charming on its own. And I’ve select it again.
Every child deserves a happy childhood. Raising awareness about childhood cancer we help to make the dreams of children with cancer come true. Dreams for a happy childhood, better treatment, better quality of life full of love ahead through better funding of childhood cancer research and access to innovative treatments.
Today marks the start of Childhood Cancer Awareness Month.
The cause of childhood cancers is believed to be due to faulty genes in stem cells that give rise to nerves, skin, blood and other body tissues. For some unknown reasons, the faulty genes can sit quiet and show their ‘bad’ character after birth and programme the cells into cancer cells.
So, there is no evidence that links lifestyle or environmental risk factors to the development of childhood cancer, which is opposite to many adult’s cancers.
Every 100th cancer patient is a child. Cancer is the 2nd most common cause of death among children after accidents.
Children are not little adults and so their cancer. Some childhood cancers have a good outlook and successful protocol of treatments. However, some of the cancers do not respond to the known drugs, or if respond cancer cells find the way to develop resistance and come back being more aggressive. Among theme are some forms of brain tumours, neuroblastoma and sarcomas; cancers developing in certain age groups and/or located within certain sites in the body, along with acute myeloid leukaemia (blood cancer). Children with a rare brain cancer – diffuse intrinsic pontine glioma survive less than 1 year from diagnosis. Children with soft tissue tumours have 5-year survival rates ranging from 64% (rhabdomyosarcoma) to 72%(Ewing sarcoma). Less than50% of children with the aggressive form of neuroblastoma will live beyond 5 years with current treatment strategies.
For 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.
The most common types of childhood cancer are:
Leukaemia and lymphoma (blood cancers)
Brain and other central nervous system tumours
Muscle cancer (rhabdomyosarcoma)
Kidney cancer (Wilms tumour)
Neuroblastoma (tumour of the non-central nervous system)
Bone cancer (osteosarcoma)
Testicular and ovarian tumours (gonadal germ cell tumours)
When I look back on my journey in 2017, there were many junctions, traffic lights and stops as well as ups and downs. Junctions were to make decisions, while traffic lights and stops – to be patient. Ups and downs were my feelings of satisfaction. The good mix of both kept me to stay human. It is not the number of grants received that matters it is who around you. I have met genuinely curiosity-driven students who made this journey fascinating and very special.
My most memorable Ups were the successful examination and graduation of my PhD student John Nolan, organisation and chairing the IACR Meeting session: Challenges in Childhood Cancers, the Mad Hatter’s Tea Party and the Gala Dinner with the CFNCRF, the launch of my very own research team thanks to the funding by the NCRC and the Neuroblastoma UK, the successful completion of two final year undergraduate and two MSc projects, and welcoming the new PhD student Tom Frawley.
My team is growing and I am looking forward to 2018!
This network of galaxies is a new project to get insights on how and where childhood cancer is placed on social media. It is a collaborative project with Prof Richard Arnett. It is already very exciting and more to come!
#ChildhoodCancerAwarenessMonth is over. However, childhood cancer is not going away. The battle is not over. Families will be still affected by the lack of treatment options available to their child. More research is needed. Please do support enthusiastic people who do want to make the change. Every single contribution counts.
The more important reason is that the research itself provides an important long-run perspective on the issues that we face on a day-to-day basis. (Ben Bernanke)
I would like to thank everyone who followed my blog during this month and hope would continue!
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.”