FundARC is born

Finally... it has come true! Last November 18th, FundARC's official presentation event took place at El Romanguer in Canyelles, the town where this foundation is based.

Months of preparation and some last-minute nerves culminated, in a way that we would never have dreamed, in this very special event, which had political personalities, scientists of the first level, and also the warmth of the family and the closest friends.

Mercè Codina and Elisa Bouda were in charge of presenting the event and facilitating the interventions. Mercè is Anna’s mother and president of FundARC, as you know, and Elisa is a close friend of Anna’s, whom she met during the time they shared in high school. Their role as presenters was crucial for the smoothness and success of the event, managing to convey the message to the attendees in an understandable and enjoyable way, and facilitating the interventions of the personalities and guests during the course of the presentation.

Rosa Huguet, mayoress of Canyelles, was in charge of opening the event, with a very emotional and close speech that made us feel at home. She made the audience aware of some of the social initiatives and projects that are carried out in the town of Canyelles, such as the Amigurumis weaving workshop, organized by the women’s association. The money raised will go to the Foundation, for which we could not be more grateful. Rosa also conveyed a very motivating and powerful message, according to which human potential has no limits and great things can be achieved when we join forces to work together for a good cause.

The talk continued with a very emotional presentation of the case of Anna Rovira, who gives her name to this foundation, by Mercè. She introduced us to what Anna was like, a perfectly healthy girl with healthy habits, and explained how she suffered from the disease, from the first symptoms, through the treatments she received and to the tragic outcome. We knew that it would not be easy for Mercè to tell this story, since the wounds from the loss of her daughter have been very painful. She herself admitted, and we all knew it, that there was a possibility that she would start crying while talking about it, but still Mercè was determined to explain Anna’s case herself with the help of Elisa and in hindsight it was a great decision. Who better than a mother who has lost a daughter due to the sarcoma to transmit first hand the havoc it creates, both in the person suffering from it and in family and friends. We wanted this story to reach the attendees and raise awareness of the suffering that this disease can cause, suffering that is usually invisible in society due to the few people who suffer it in silence, if compared to other types of cancer.

The presentation of Anna’s case was interwoven with interventions by different doctors, pathologists and sarcoma researchers from the most important research centers in the country. The experts clarified many issues related to cancer in general and sarcoma in particular, in a flat and pedagogical way, highlighting even more the raison d’être for a foundation like ours. Because the truth is that many of the attendees still did not know exactly what the term “sarcoma” means, or even that it is related to cancer. This format of intervention by the experts at the same time as we reported Anna’s case was difficult for us to manage and coordinate with them, since on the day of the presentation we had not even been able to rehearse it together. We created all the slides in the presentation with the initial idea that it was just us talking. We were clear that we wanted to expose Anna’s case at the same time as we explained what sarcoma is, what challenges diagnosis and treatments currently pose and what are the shortcomings that hinder research. After all, Anna experienced these impairments firsthand during the course of the disease. But in the end the decision to involve the experts was the most correct. We, due to our lack of knowledge of medicine and biology, would have given no more than some figures and facts in the public domain, and the attendees would probably have perceived it as a more impersonal account, or even as a boring academic lesson (although some of the numbers are certainly hair-raising). Despite having coordinated with them how the content of the scientific part of the presentation would be distributed (apart from managing some changes due to a last-minute absence) and preparing some questions that we would ask them to kick off their interventions, no we found out, up to the day of the event, exactly what they would explain and how they would explain it. Our feeling is that they did not need to bring anything prepared, because they spoke about a subject of which they have great experience and knowledge, so they were able to improvise at the same time as they presented the concepts in a close and pedagogical way that all attendees could understand.

Ana Sebio, doctor in medicine and surgery from the Universitat Autónoma de Barcelona, who performed the first intervention of the four experts, explained to the attendees what sarcoma is, a term that many people do not know and that is simply used as an umbrella to group more than seventy rare cancers, different from each other, but which together do not represent more than 1% of all diagnosed cancer cases, and which can arise in any part of the body. Cleofé Romagosa, a pathologist specializing in sarcomas at the Vall d’Hebron University Hospital, explained to the audience what the task of a pathologist in general is in the diagnosis of cancers and what a challenge the diagnosis of sarcomas is. And the fact is that most pathologists have seen so few sarcomas in the laboratory, that sometimes they are not able to identify them when they see them under the microscope. Iker Badiola, professor and researcher at the University of the Basque Country, explained to us in simple and understandable terms what cancer is and how difficult it is to treat due to the simple fact that it is the cells of our own body that act against us. Even as the tumor grows, the cells evolve and mutate, so treatments that were effective at first may no longer be effective. It also helped us understand why metastasis represents a big problem and challenge for researchers, since cancer cells that reach other organs or parts of the body are more resistant due to a matter of “natural selection”. This sentence by Iker, particularly worrying, made us realize how far behind cancer research is in many cases. He said that “most cancers are still treated by cutting, burning and poisoning”, referring to surgery, radiotherapy and chemotherapy. Finally, Mònica Pascual, a researcher at the Biomedical Research Institute of the University of Barcelona, gave us a glimmer of hope when she talked about different new studies that are being carried out based on immunotherapy, quite promising, and that they may represent a major advance in cancer treatments in the near future, if research programs get the necessary funding.

Unfortunately, Doctor Javier García del Muro, from the Catalan Institute of Oncology, who was the doctor who treated Anna, could not be there due to a last-minute agenda item. We would have really liked to have been able to count on his presence, as he would have been able to explain first-hand the treatments that Anna received and why they did not work, but it was not possible.

Next, and after showing a short video with testimonies of people who have gone through the same trance as Anna’s family, Elisa and Mercè presented the Foundation to all the attendees and to society in general. Fundarc was born with the aim of responding to the Annas of the future. And this can only happen through the commitment to research and innovation, as well as the solidarity of the people. As Mercè explained (and Alberto would also emphasize it in the following speech), the Foundation will also have transparency and responsibility as one of its fundamental pillars, values that every foundation or social entity that needs to count on trust of the people to move forward must guarantee. Elisa remarked that Fundarc was born as an independent and non-profit entity (as it could not be otherwise), without any ties to governments or institutions. And he also made it clear how important it will be to have a stable base of committed partners, which will be essential to be able to continue funding research projects. Finally, he encouraged people to help us, either with financial contributions, volunteering or simply spreading the word about the Foundation.

Towards the end of the presentation, Alberto Martínez, who came from Madrid specifically to participate in this event (and to whom we thank this effort) told us first hand his experience at the head of the Fundación Mari Paz Jiménez Casado, for which he is a patron and with whom FundARC has signed the first collaboration agreement. When talking about the importance of a Foundation’s financial transparency, we liked it when he said that a foundation must have “crystal pockets”. And not because they have to break at the slightest impact, but because you should always be able to see all the money that goes in and out and, above all, where it goes.

Before the closing ceremony, the Minister for Social Rights of the Generalitat de Catalunya, the honorable Carles Campuzano, made the final speech. He emphasized that in Catalonia we have top-level research centers (some are even reference centers for the treatment of sarcoma) and very talented scientists, as a result of the investment made over many years by the government. So, our foundation is not born in a vacuum and we already have a headstart that we must take advantage of. We couldn’t agree more with this, but we also believe that research into minority diseases has always been underfunded. As is logical, public investment in healthcare seeks to maximize the number of lives saved per euro invested, regardless of which diseases people suffer from. Therefore, funding for sarcoma research, which affects 6 out of every 100,000 people, will hardly be prioritized by the government. It is for this reason that FundARC’s work will be so important in the coming years. As it is such a minority and invisible disease, who better than people who have lost a loved one because of the sarcoma to understand the need to boost research into treatments and diagnosis of this terrible disease.

Finally, a symbolic but very emotional act to thank the presence of the scientists and their commitment to research closed the presentation. The four trustees of the Foundation, Mercè Codina (president), Ramon Rovira (Anna’s father and secretary of the Foundation), Cristina Coca and Jordi Poch (Anna’s two good friends), deliver a very special present to each of the scientists in person. This present consisted of a Daruma, a type of doll or amulet from the Japanese tradition which, as Marc Rovira, Anna’s brother, explained to all those present, symbolizes commitment and perseverance towards an important milestone that we want to achieve. This milestone or goal to be achieved, which must be ambitious but realistic, was written by each of the scientists on a card and then inserted into a sealed “time capsule”, which will be opened in ten years and not before to check if the goal has been reached. The Daruma that each one received, and that they must always have in a visible place while carrying out their research task, will remind them of the commitment they have acquired and motivate them to keep working every day until the milestone they wrote on the card that they introduced in the time capsule has been reached. In ten years we will find out if that has been the case.

Once the debates were over, and until the end of the event, the attendees were able to enjoy a snack, courtesy of Pastisseria Mercè de Vilanova and Canyelles City Council, and some leisurely conversation, an occasion to take the opportunity to take photos in order to immortalize the moment. The impression of the attendees was very positive, and many of them told us so, both at the end of the presentation and during the following days, which we feel very satisfied about.

We would like to thank Rosa Huguet for her unconditional support, without which we would not have reached where we are now. From the first moment, she encouraged us to persevere in our desire to create a Foundation, and the fact is that the enthusiasm and optimism she exudes when it comes to helping people are contagious. She also offered us the option of having the Foundation headquarters in Canyelles and has given us all kinds of facilities, including this magnificent space, El Romanguer, to be able to carry out this event, even taking care of some expenses, as well as helping us organize the event. Thanks again, Rosa.

We also want to thank the doctors and researchers who wanted to accompany us that day so that the public could put their faces to the people behind the research centers, and so that they could tell us firsthand what their work is like day to day. As we have already explained, they shared part of their experiences and knowledge in a very enjoyable way. We, and I’m sure many people too, were very surprised to discover how humble and approachable they were. As an anecdote we will say that before starting the presentation, when we addressed Iker Badiola to thank him for all the effort they are making with the research, he replied: “No, it’s the other way around, we are the ones who are grateful to you. I earn my living with research. You are the ones who do this in your free time in a totally altruistic way.”

We are equally grateful to the Cuatrecasas team, especially to Cristina Coca, who is also a member of the Foundation’s board of trustees, and to her colleague, Héctor de Urrutia, without whose effort and solidarity this Foundation would not exist yet. Thanks to them, the Anna Rovira Codina – Stop Sarcoma Foundation (FundARC) is now a legally established and registered foundation in Catalonia.

However, we are aware that we are just now starting to walk and we have a lot of work to do. However, we already have all the tools to work and a fantastic team to carry out our mission. We are still a small team, made up of family and friends close to Anna, and we are aware that our resources are limited (both in time and money), but the cause is well worth the effort we are making, and for sure we will keep growing. With the solidarity that the majority of society continues to show nowadays when it comes to saving lives and improving people’s quality of life, we have reason to be optimistic. Let’s continue.

FundARC team
December 2023

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