The Conor Foley Neuroblastoma Cancer Research Foundation 3.04

Our Mission:

The Conor Foley Neuroblastoma Cancer Research Foundation (CFNCRF) has been set up to continue on Conor's legacy by funding research to help discover novel, less toxic treatments with the ultimate goal of finding a potential cure for Neuroblastoma.

We aim to raise much needed funds to assist in maintaining sustainable funding into Neuroblastoma Research in Ireland. We will work with both the Children's Medical & Research Foundation (CMRF) and the Royal College of Surgeons Ireland (RCSI) who will lead the research into these new and pioneering treatments.

What is Neuroblastoma?

Neuroblastoma is a malignant (cancerous) tumor that develops from cells called neuroblasts that are found in the nerve tissues of the body. In the majority of cases Neuroblastoma effects infants and children under the age of 5. It is considered a rare cancer as it effects 1 in 100,000 children a year in Ireland.

Due to the ability of Neuroblastoma to mask other common childhood illnesses, most children are diagnosed with advanced stage IV disease, meaning the cancer has spread to other parts of the body. Children diagnosed with stage IV Neuroblastoma have a 30-40% survival rate with a further 50-60% chance of relapse up to 2-years after completing their treatment.

Conor's Story

Conor was first diagnosed with stage IV Neuroblastoma aged 4 in May 2002- he was given 6 months chemotherapy on the Kushner protocol followed by a bone marrow transplant and 25 radiotherapy sessions with an additional 6 months of roaccutane treatment before he was finally given the all clear. However it was only after his 5-year check up, Conor was officially declared cancer free and remained cancer free for 10 years.

In April 2012 almost exactly 10 years to the day at aged 14 Conor relapsed with stage IV Neuroblastoma, where we were told his chance of survival was 5%, but we didn't give up. Again, Conor embarked on a 2-year protocol of rigorous treatments, all of which were different to what he had received in 2002. In addition to his chemo-radiotherapy, he also underwent MIBG treatment and a second bone marrow transplant before once again Conor was in remission. This led to Conor being able to receive the latest immunotherapy meaning he was the first relapse patient to receive it, he also trailed the portable ‘Baxter pump’ which allowed him to receive his treatment at home. After enduring all of this for a second time, Conor was yet again officially declared in remission in March 2014- a remarkable achievement for anyone with this disease.

After completing his treatment Conor was carefully monitored every 3 months, but after only 8 months, he relapsed again. The devastation of this news began to sink in fast, but we didn't give up. The oncology team in Crumlin fought hard along side us to save Conor's life- he was the first child to have his tumour tested for any markers that could be targeted using new molecular targeted therapies in the hope that this would beat the disease once and for all. This led Conor to also be the first child in Europe to trial the latest drug that had just become available here from the USA. However due to the sneaky and unpredictable nature of Neuroblastoma, the drug had little effect and Conor passed away aged 17 on the 3rd of July 2015.

We will forever be grateful to Crumlin hospital, the oncology team in St John’s ward for looking after and fighting for Conor’s life with us for 14 years.

As we have experienced first hand what this disease can do, our mission has now changed direction, as we aim to help raise funds for research into a potential cure for Neuroblastoma. By doing this we aim to help other children who have to deal with this horrific cancer, giving both the child and their families some hope for the future.

On behalf of our son Conor, this is a very worthy cause and we would very much appreciate your support in helping us to raise funds.

Conor would have been 18 on the 21st of April.