Dilia nació en San Martín de Loba, municipio ubicado al norte del departamento del Cesar, Colombia. Sus padres fueron Florentino y Ernestina. Conoció a su esposo, Valentín, quien también era su primo, en un baile cuando ella era joven y se enamoraron de inmediato. Tenían doce...

The entire Factor-H team and families in the Abrazos Program mourn the passing of our beloved Maria Fernanda Soto Santris, 16, part of our HD community in Colombia. The second of three sisters, Maria Fernanda belonged to the Abrazos Program (at-risk for HD kids) for 4 years and had recently…

Zoraida always received us with a child-like smile. She was the “mother” of the local San Luis association FAHUN (Fundación Amigos de Huntington), an association founded in 2017 by young people at risk for HD in Maracaibo. Zoraida acted as the Secretary of the organization, and she often brought a…

No matter how many patients we meet along our journey, it is always difficult to say goodbye. Death is inevitable. For our friends suffering with HD, it comes earlier and always in tragic circumstances. However, there are moments in life that are impossible to forget. The pictures below were taken…

The image above has become symbolic for me. During my second visit to San Angel, a rural area in the State of Magdalena in Colombia, I visited a few families dispersed in the countryside, isolated from the rest of the world, a countryside that hides many patients away from aid,…

A life gone too soon Last week we lost a friend and a very special person. A life story that would have remained untold. He is one of the forgotten children of the world, a life made difficult by poverty, by Huntington’s disease, and by social neglect. His story, now…

Las “historias de vida” de hoy nos llevan a un lugar muy difícil y triste, pero que lamentablemente existe. Muchas personas con Huntington acaban abandonadas en la calle. Ya sea que los abandonen sus familias o debido a problemas psiquiátricos que surgen de la propia enfermedad, los jóvenes afectados por la EH a veces terminan…