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:

Generosity of Pixabay
  • 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.”

The Foleys

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!

 

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.

Three girls fountain in Mainz Germany

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

Jungle Jazz – Diner Dance

On Saturday – April 9th, the Conor Foley Neuroblastoma Cancer Research Foundation had their annual fundraising Dinner. This year the theme of the Dinner was Jungle Jazz in memory of the favourite movie of Conor – Madagascar at Trim Castle Hotel.

So many people came to support this fantastic family. The family, who lost their beloved son to neuroblastoma, but has found unacceptable to stop their fight against neuroblastoma. They do know that a cure won’t be found tomorrow. Instead, it may take time, money and efforts to crack the code of this disease so other kids can do better. Thier deal with the situation is priceless and infectious – none can stand still around.

 

Why do we need fundraising for cancer research?

There is no short answer. Research is a slow, meticulous process of testing theories and finding out which ones work.It is exactly the same for both curiosity- and disease- driven questions. Long years of ground research full of ups and downs are critical for any breakthrough or progress. Very often with more downs than ups. Importantly, all researchers build on the work of their predecessors. This is the nature of science.

To understand the world around us, we have to do be curious and do “blue sky or curiosity-driven” research. It is a long shot, but this type of research can lead to practical applications down the road. One of the most recent examples is a drug Vismodegib (Erivedse) to treat basal cell carcinoma (the most common type of skin cancer) approved by the FDA in 2012. This drug targets genes of a hedgehog-associated signalling pathway. Defects in this pathway were found to drive many cases of skin cancer. But, how this relationship was found? Blue sky research!

Researchers studied hedgehog signalling in fruit flies and mice. One of the researchers had a strong interest in a fruit fly gene called hedgehog. If this gene is defective, then fly embryos look stubby and hairy aka a hedgehog. Further research brought more interesting facts and relationships leading to the identification of a drug that can stop the function of this faulty gene. Decades later with the advancement of genome sequencing, the defect in hedgehog signalling pathway genes was identified in patients with locally advanced and metastatic basal cell carcinoma.

What would happen if there were no research in fruit flies and mice? There would have been no rationale to create a drug like Vismodegib!

The best discovery research is unrestricted. It is driven by intellectual curiosity and conceptual advancement. More such curiosity- driven research is needed. For every medical breakthrough, for every Vismodegib, there were hundreds of blind alleys and failed ideas.

The research is a long-term investment. This contradicts to the short-term life of the politicians and governments who give the money. They do not take the risks. So, the discovery research becomes critically underfunded.

Fundraising creates opportunities for blue sky research and developing cancer treatments.

Thank you all who support cancer research charities!