Patients and relatives from Bogota met at the SIMMON foundation with the purpose of celebrating the GISTer’s party: “GIST Awareness Day”. The celebration was not complete as our partners from other cities were missing, who were accompanying us from the heart and from here we extended our friendship to them.
We engaged in great discussions, including reminiscing about GIST Awareness Day. The most remembered campaigns were when in 2014 we set out to make paper boats with messages from patients with the goal of breaking the “Guinness World Record” of origami
boats – we never knew if we achieved it because it was impossible to send the amount of paper boats that came to us from all over the country. Or in 2016 when we asked everyone to think what had been the best gift that time had given them. And the 2017 campaign: “Be a H.E.R.O. for Cancer”, where the foundations of Latin America countries made a video with the messages sent by the patients. Today we see that video and we cannot avoid tears. Finally, we gave the value to this and the past year we have done: “GIST DO IT”, identifying all the changes that we want to see for patients, doctors, research, health systems, and countries.
Leaving aside the nostalgia, we went on to talk about the alliance made with the SIMMON Cancer Foundation, an entity that will formally take charge of the GIST patient care, leaving the GIST Colombia Foundation with the work of education and advocacy.
Finally, we talked about the “Salud con Datos” project and the need to have data that help support research. Patients are aware of the importance of this data and offer to start the process with their own data, thus providing the initial seed of what will be the Colombian database, as well as leaving records with their respective oncologists, encouraging them to reach out to their patients and ask them to contribute to these records.
We said goodbye with the promise of meeting more often and to realize, in the near future the dream of many patients, such as having a national meeting of GIST patients.
From this, our homeland, we send a fraternal greeting to all the GISTers of the world, who in each of their countries, today have a meeting, showing the world that we are not rare, that, despite being a rare disease, if it is diagnosed on time and it is treated properly, stops being a deadly disease to become a chronic disease.