As a parent rep. in the Euro-Ewing’s Consortium, I was invited to attend this networking meeting in September and decided to use this opportunity to bring Unite2Cure to the group’s attention.
Thanks to Stefan Bielack for organising a friendly, inclusive and very informative conference. Not convinced by the 8 a.m. start on the second day, though! 🙂
There was a good range of sessions, including some on research at very early stages, which gave a glimpse of what the future might hold. With regard to Ewing’s Sarcoma, what stuck in my mind was something Bass Hassan of the Oxford Cancer Centre said:
‘There are two agents with exquisite sensitivity: PARPi and IGF-1R’
These were targets that cropped up in session after session and it was heartening to learn from Sandra Strauss of UCL that a Ewing Sarcoma PARPi Consortium has been set up in collaboration with SARC, the American charity. As a parent representative on the Euro-Ewing’s 2012 trial, I find it disappointing that promising new agents like PARPi do not yet form a part of our flagship trial. Although, novel agents might be integrated into EE 2012 in the future, this will have to wait until one of the conventional chemotherapy arms is dropped.
The five minutes I had to present the Unite2Cure initiative prompted a positive response from delegates. U2C aims to amend European law so that there are strong obligations and incentives on drug companies to conduct research into children’s cancers. I was pleased to see that many delegates, like Bernadette Brennan and Martin McCabe, signed our e-petition over the following week.
As predicted, our petition easily smashed its target of 1000 signatures by the end of September, Childhood Cancer Awareness month. For me, what has been compelling, though, is not the number of signatories but the powerful stories almost all of them have had to tell, like this one from a Director in the USA.
“My son has recurrent Ewings Sarcoma. Because it is an orphan cancer little progress is being made to fight it. We need better methods and regulations to support research and development of new therapies. Now. ”
Article submitted by Chris Copland, Consumer Representative, National Cancer Research Institute and Unite2Cure founding member.
Ewing’s Sarcoma: a primary bone cancer that tends to strike adolescents between 10 and 20 years old.
Euro-Ewing’s Consortium: International Clinical Trials to Improve Survival from Ewing Sarcoma (EEC project) is a University College London (UCL) coordinated collaborative project involving 20 European partners, which has recently been awarded funding through the European Union’s Framework Programme 7 (FP7).