About Villa Joep

Joep fought for his life and endured all the medical treatment. In the end, he lost the battle against this devastating disease. Many parents who had to go through the same experience, decided to continue the fight against neuroblastoma. In 2004, Villa Joep was founded to raise money for neuroblastoma research. Joep’s parents founded Villa Joep after losing their little boy at the age of 4.5. This fund has since then turned into a national movement and funding model which is rapidly expanding.

Neuroblastoma
Neuroblastoma is one of the most deadly forms of childhood cancer and it is one of the most common ones in very young children. The incidence of childhood cancer and specifically neuroblastoma is statistically small compared to adult cancer. Unfortunately, this means no large funds are available for the necessary research. But how to explain this to a child who fights to survive and suffers from all medical treatment?

The ultimatie goal
Again, Villa Joep's ultimate goal is to cure every single child with neuroblastoma. The main task of Villa Joep is fundraising. Many initiatives like spinning events, marathon runs and other smaller local activities, all contribute to the fundraising programme of Villa Joep. This Villa Joep money for research projects is money spent well. The recent breakthrough in neuroblastoma research was published in the high impact scientific journal ‘Nature’, last March 2012. This research was partly funded by Villa Joep.

Seven Researches
Since the start Villa Joep supported so far seven innovative research projects in the most specialized hospital laboratories in the Netherlands. The studies extend over three research directions: basic gene research, research on antibodies and translational research on epigenetic drugs.

A team of independent physicians assess the research applications which are submitted at Villa Joep. Dutch oncologist Maarten Egeler leads a team of specialized colleagues from different hospitals in North America.

Breakthrough
After years of standstill the examination of the entire genome led to a major breakthrough in February 2012. The world's authoritative journal “Nature” published the first results of this study sounding the total DNA sequence of childhood neuroblastoma tumors. In a Villa Joep initiated and supported research, the researchers of the Oncogenomics section of the AMC in Amsterdam discovered two causes neuroblastoma.

Ambitions
Villa Joep connects the medical ambitions around neuroblastoma and is a resource of information for those involved. Collection of funds, use it to help pay surveys and information are the three main objectives of Villa Joep. The goal of Villa Joep is achieved when no child dies of neuroblastoma anymore. In the year 2015 we at least want to enter into a sustainable partnership with a research institute. We also want to adopt a Villa Joep neuroblastoma laboratory within the new National Children's Oncology Center (NKOC) in the Netherlands, that will be one of the largest Children's Oncology centers of the world. In order to achieve this we work hard to grow our revenues. Until now we raised up to 4 million euros, in the last years around 800,000 euros per year. For a credible partnership with NKOC we need to grow to 1.5 million per year in 2015.

100% to research
Villa Joep does not have any operational cost. It is entirely run by volunteers. All institutes, people and companies involved in Villa Joep donate their time and professional expertise for this remarkable initiative. So this enables the foundation to spend 100% of the money on neuroblastoma research. Villa Joep is now looking at international expansion and is therefore searching for high quality neuroblastoma research. So, please contact us if you know
of any neuroblastoma scientific research group or other professionals in this field.