From the Carreras Foundation to Aless Lequio: "If it were not for associations, childhood cancer research would not move forward"

The lack of funding for research is an endemic evil in Spain. In the case of the one aimed at the study of childhood cancer, The presenter Ana Obregón wanted to draw attention to make visible the scarcity of resources, during his time on a television program in which he recounted the hard times he experienced since the diagnosis of his son Aless Lequio, who suffered from a Ewing sarcoma, a rare tumor that he fought for two years and that he could not overcome in 2020.

The actress, during the emotional interview on the program 'Mi casa es la tuya' by Bertín Osborne, criticized that Spain is in the last positions in childhood cancer research and thanked the businessman for the donations for the purchase of proton therapy equipment Amancio Ortega. "I've gotten tired of asking," he said, when he emphasized the need to investigate the types of childhood cancer suffered by children and young people. For this reason, she talked about the foundation that he has launched in the name of his son to raise funds for research. Ana Obregón thus joins the list of fathers and mothers of sick people, famous or anonymous, who choose to undertake a fight against an illness through an organization.

"If it were not for associations, childhood cancer research would not move forward", confesses Gabriel Tirado, president of the Association of Parents with Children with Cancer of Aragon (Aspanoa). The reasons are that "there are few cases" (only 1% of all cancers) so treatments in this field are of "poor economic performance for pharmaceutical companies". Furthermore, research needs "more controls and clinical trials" because it involves vulnerable groups. For all this, he recognizes that "it is rarer for private financing to be available for research into treatments for childhood tumors." The association has allocated 452.783 euros in childhood cancer research, all in Aragón, distributed in five projects.

Among the groups that Aspanoa supports, one has been investigating a rare tumor since 2019, diffuse truncal glioma (DIPG), led by scientist Alberto Jiménez Schuhmacher and the Institute of Aragon Health Research (IIS Aragon). Look for new ways to diagnose this rare childhood brain tumor. "In rare diseases and tumors there are always families that get together to try to fight over that disease," adds Tirado, who affirms that in many cases "parent associations are financing research." Is about "long and expensive" projects until you start to see results. "Researchers need stable funding that allows them to carry out medium and long-term projects," he adds. 

Since last year, they have also been collaborating with the ISS Aragón in the research of a treatment that prevents medulloblastomas more aggressive tumors reappear or spread, in which case the survival of this childhood brain tumor drops drastically. It is led by the scientist Patricia Sancho.

In the community it was recently created Apsatur Aragon, the Association of Patients with Sarcomas and Rare Tumors of Aragon. It is a non-profit organization that brings together patients, family members, people who are sensitive and/or interested in promoting and improving the situation of those affected and their environment, present and future. They have two research grants, one to study Ewing sarcoma. Part of the funds come from the campaign launched by Izarbe Gil, a young woman from Zaragoza diagnosed with the disease, who died last year. and whose initiative his family has followed.

"Visibilize"

The contribution of associations like yours "is still a grain of sand," acknowledges Mario Fernández-Urrutia, secretary of the association. "What is needed is for big pharmaceutical companies to dedicate all the research possible", he points out, since where the association can have a more relevant role is in "making visible" and "letting people know that it exists and that it can happen to anyone." The organization estimates that 3% of the tumors detected are sarcomas and there are 70 known varieties, as well as subtypes. "Total, there are about 150 types. It is complex to investigate everything we would like," she confesses. 

He highlights that another of the main objectives of the association is that "all Aragonese, wherever they live, are cared for in the best possible way" Since they are rare diseases, they require specialized professionals. "It is not the same to be treated by an oncologist who sees a sarcoma every three years as by a team specialized in this type of tumor," he gives as an example.

The visibility provided by a famous person can help raise funds, although there is also the risk that the disease "will be forgotten" when the media hype passes, warns Fernández-Urrutia. For his part, Tirado points out that from time to time new foundations are created "The important thing is that there is control of the money."

Among the oldest foundations is that of the tenor Josep Carreras to fight against leukemia, after he suffered the disease. It was more than 30 years ago and they continue to promote projects for the benefit of patients and science to make it curable.

Another television presenter who has a foundation for health research is the journalist Isabella Gemio, who in 2008 created an organization that bears his name for the Research of muscular dystrophies and other rare diseases, after his son Gustavo was diagnosed. He has also written a book based on his experiences with his son and the fight against the disease, 'My son, my teacher'. Among the objectives of the foundation is to finance scientific research projects that seek treatment or cure for this type of minority diseases.