My name is Juan Carlos Angulo Calderón, I live in Costa Rica, I am 32 years old, and I am the son of a patient with Huntington’s disease in the advanced stage of the process currently, my maternal grandmother died 24 years ago due to this diagnosis. Nurse by profession, I´m founding member and president of FAHUCORI (Huntington Family Foundation Costa Rica), project that arise from love for patients and their families, and their needs for accompaniment and advice in the disease process, and to make the disease visible, and avoid the feeling of loneliness, stigma, and hopelessness.
The diagnosis of Huntington’s disease in a family generates a strong impact on multiple aspects of its life: psychological, economic, family, and religious, associated with the uncertainty of the future, and all this gets accentuated in the era of the XXI century when access to the internet is very common, allowing own research, generating frustrations by evidencing the absence of the cure and the unstoppable progress of the disease, which commonly leads to emotions associated with hopelessness.
The 2022 Latin American Huntington’s Disease Conference was a unique and enriching experience from multiple points of view: it has allowed us to know the efforts at the international level to go deeper in the diagnosis process as well as the commitment of the scientific guild in applying its knowledge in search of contributions to the state of health and quality of life of the people who suffer from Huntington -which is currently a great challenge-. The activity did not focus only on therapeutics; The epidemiological, biological, and diagnostic aspects were covered, and approached, from an understanding of intervention by multidisciplinary teams.
A space full of knowledge, presentations with top-notch data, world-known experts who illustrated their daily efforts -and love for what they do-, clinical trials that generate hope for all those who share this process, wonderful people who with their empathy and commitment bring hope and love to their patients and families with a motivating message that begins with a smile on their faces.
The opportunity to demonstrate the commitment and union of people who, as a result of their vocation, charisma, and empathy, join forces to bring joy to people who do not see beyond their condition. The consolation of a hug, and the gesture of love of the Foundation, was noticed by the participating clinical staff, as well as parents, mothers, and children who have the disease, or people with a genetic predisposition to develop it, all this through a sharing of knowledge and experiences, that allowed everybody to feel the hope for a better quality of life, without worrying about the future, because, each step and advance is part of the process of which many people of great nobility, dedication and preparation work with a common goal and is together to work for each of the patients and their families.
For all his efforts and dedication that showed in every detail of this enriching activity that allowed us to unify objectives from all latitudes, my thanks to Factor H for his commitment, its work, and the love Factor-h radiates for each family member and patient.
Juan Carlos Angulo Calderon
Huntington Family Foundation Costa Rica