#fundraising – Blog about neuroblastoma research

The Race That Nearly Wasn’t – 20K

On April, 30^th 2020, the 20K virtual race organized by Breakthrough Cancer Research came to an end. 1247 people participated and 496 completed this challenge. Together, we raised online over €50,000 to support their life-saving cancer research programmes.

As a scientist myself, I know that behind many current default living settings is intensive research in the past. IT would have never advanced if at some stage no discoveries in physics, chemistry have happened. We would have never been able to fight bacteria infection of no antibiotic was discovered. What about discovering of insulin? This list can go on and on… Just imagine if no research happens now. How we could cope with the current coronavirus pandemic? How we could help many people with cancer to have a healthier and longer life?

Breakthrough Cancer Research united many sports professionals and enthusiasts to build up a spirited community to support vital cancer research during the COVID-19 restrictions. I heard about this race by chance – my PhD student signed up to do it. When I read it, I thought it sounds achievable to complete 20K within a month. One small step at a time. It was a slow process. But it has transformed me.

At the finish line, I became addicted to my steady jogging within the allowed 2K distance every day. I have to confess that it is incredibly challenging for me to wake up, tie my sport shoelaces and go for a jog. My body wants a smooth transition from sleep to the active state, particularly when you are at home every day! This was normality in the past.

What did I discover going through this transformation? My body knows better its needs. Every morning I start it slowly with just an intensive walk. In 2-3 minutes, my body requests more fresh air in my lungs and higher endorphin levels in my blood. I can’t resist and start jogging. 🙂

Why mornings one may ask? I have tried different times during the day. My body has decided on morning hours even it is challenging… No option to negotiate.

Break Through Cancer Research are launching 40K and 60K May race. Could it be your chance for a transformation? Sign up today at: https://yourvirtualrace.com/theracethatnearlywasnt/

Every child deserves a happy childhood

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.

September is Childhood Cancer Awareness Month!

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)

Please see a short video The Childhood Cancer Ripple Effect created by St. Baldrick’s Foundation.

Goodbye 2017! Hello 2018!

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!

Goodbye 2017 and Hello 2018!

#ChildhoodCancerAwarenessMonth ends today

#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.

Scientist as imagined by a 7-year-old boy

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!

The Puzzle of Childhood Cancer Research

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.

The good news: that things are changing thanks to The Conor Foley Neuroblastoma Cancer Research Foundation and Lightitupgold Childhood Cancer Foundation. Some childhood cancer research is funded by Children’s Medical and Research Foundation. But this research field needs more.
#ChildhoodCancerAwarenessMonth

MRCG_Research_Report

Irish Neuroblastoma Research Charity

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.”

We are continuing Conor’s legacy in removing and breaking down medical science barriers, and we have set up this foundation with the ultimate objective of finding a cure for NBL.Our aim is to secure continuous annual funding for NBL research in Ireland. With this funding we want to help develop an NBL research consortium to link with international research groups and collaborations.

Fundraising for Childhood Cancer Research

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 4 cents 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 years vs decades = the discovery research becomes critically underfunded.
Who can change the situation? You, me and anyone. People who care. It happens through their active position and fundraising. Like the Foleys, Childhood Cancer Foundation and the Children’s Medical and Research Foundation.
Fundraising creates opportunities for blue sky research and developing cancer treatments.

If plants can grow through stones, so we can make a change.

Thank you all who support cancer research charities!

http://neuroblastomablog.com/why-do-we-need-fundraising-for-cancer-research/

Childhood and Cancer

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.

CMRF Spring Newsletter features neuroblastoma research

The research is a long-term investment. It is always built up on the work of the predecessors. Keep research running is crucial to make the dreams come true. Dreams for better treatment options and quality of life.

Thank you to everyone involved in raising funds for CMRF!

CMRF Spring Newsletter can be found here – CMRF-Spring Newsletter Final 15.05.17