U2C in Vienna: the European Bone Sarcoma Meeting

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.

Additional information

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). 

Unite2Cure petition hits 1,000 signatures .. but we need more

Over 1,000 people have now signed a petition from Unite2Cure, the patient-led movement which is calling for better treatment and better access to treatment for children and young people with cancer.

The petition calls on European regulators to amend the rules governing research into young people’s cancer.  It calls for better incentives for industry to invest in these rarer illnesses; and says that there should be stricter rules to ensure that promising drugs are not dropped from production when they don’t work in the more lucrative adult cancer market.

Support is coming from across Europe; and from as far afield as America and India.

Among high profile supporting organisations are: SIOP Europe, The European Consortium for Paediactric Oncology;  Childhood Cancer International, Pan Care; The Teenage Cancer Trust and the Bone Cancer Research Trust.  There is also support from senior oncologists from leading medical institutions across Europe. Parents, patients, others affected by cancer  and not for profit organisations are also lining up to sign the petition.

Most heartbreaking are the personal stories of families who have faced cancer.  Not only are children dying; but others are left with severe disabilities caused by the toxicity of the treatment used to kill the cancer.  This from a parent of a survivor:

“My 4 year old son was diagnosed with a brain tumour – Medulloblastoma. After 18 months of treatment he is in remission BUT the treatment is brutal. He now has learning difficulties, takes daily medication to treat his damaged Thyroid, has daily growth hormone injections because of a damaged Pituitary gland, has hearing loss, had cataract surgery on both eyes, Still has muscle weakness and fatigue – 2 years into remission. ALL DUE TO THE TREATMENT FOR CANCER. We need new drugs that cure the cancer but do less damage to a childs young body.”

Unite2Cure is calling on all supporters to reach out further into their own networks to continue to strengthen the case for change.  It urges all supporters to ask individual networks to sign our petition and join a wider conversation about how we need to all work together to get better drugs to children and teenagers more quickly.

Everyday in Europe 20 children and young people will die for cancer.  That needs to stop and we need to find the solutions NOW.  To  sign our petition click here.

Regular updates will be sent out on the progress of our petition and the wider work of the Unite2Cure members. If you have a personal story you would like to share please email us at unite2cure@gmail.com