A Christmas celebration for children at-risk for HD

A Christmas celebration for children at-risk for HD

December 2025 marked another meaningful journey to Colombia for our annual Christmas celebrations with families affected by Huntington’s disease. Each year, across Peru, Colombia, and Venezuela, our local teams gather children at risk for Huntington’s disease together with their families—not simply for a holiday event, but to affirm community, dignity,…
Factor-H and Skyhawk Therapeutics collaborate to Support Responsible Communication on the Falcon-HD Clinical Trial in Latin America

Factor-H and Skyhawk Therapeutics collaborate to Support Responsible Communication on the Falcon-HD Clinical Trial in Latin America

A central priority for Factor-H is ensuring that information about clinical research is shared in a way that does not create unrealistic expectations or add to the emotional burden faced by individuals and families affected by Huntington’s disease. While scientific progress is essential and provides reasons for optimism, it is…
In memory of the Maestro and in honor of his Sister - love and living in ambiguity

In memory of the Maestro and in honor of his Sister - love and living in ambiguity

On January 3rd, 2026, at 7 am (UK time), my “Hermanito” Gindel rang me. ‘They’re bombing Caracas’ he said, ‘don’t worry, I love you, I’m safe’, ‘I’ll call you later’. A call like that leaves you in a state of anxiety. Fear of the unknown. And I’m not living there.…
To seat or to eat

To seat or to eat

From top to bottom, the reality of neurological care for people with Huntington’s Disease in Venezuela and the delivery of therapeutic advancement A story by Alex Fisher “……as the heat is turned up on HD science and the current US administration have also turned up the heat in the region,…
The girl at the end of the world

The girl at the end of the world

A story by Alex Fisher “In the small space that we have built so much on, it’s not just their genes but their everyday which is a moral laboratory, and the girl at the end of the world should remind us of that.” Alex Fisher is an occupational therapist who…
To the Rhythm of the veda - Al ritmo de la veda

To the Rhythm of the veda - Al ritmo de la veda

At first, going to Barranquitas felt like stepping into the world of Mad Max. The heat, the dust, the precariousness, the sense that everything could fall apart at any moment. But over time, something shifted. Maybe it was accepting my mission—to help and inspire. Maybe it was realizing that in…
Renacer en medio de la adversidad: Johana una madre valiente frente al Huntington

Renacer en medio de la adversidad: Johana una madre valiente frente al Huntington

Eight years ago, Johana Oviedo Barrios, a mother of three and a patient with Huntington’s disease from El Dificil, Magdalena State, Colombia was living in conditions of extreme vulnerability. Without access to basic services, a proper bed, or even a functional bathroom, her living conditions posed serious risks to her…
Arte hecho a mano: Una Experiencia Transformadora para HD Comunidades de la Costa del Caribe Colombiano

Arte hecho a mano: Una Experiencia Transformadora para HD Comunidades de la Costa del Caribe Colombiano

During May and June 2025, the HD communities in Juan de Acosta, Valledupar, Santa Marta, and Algarrobo took part in a series of art workshops that blended tradition, creativity, and personal development. Organized by Factor-H, these activities aimed to strengthen manual skills, stimulate creativity, and provide participants with a meaningful…
Factor-H apoya la educación de los niños con riesgo de padecer la enfermedad de Huntington

Factor-H apoya la educación de los niños con riesgo de padecer la enfermedad de Huntington

El Programa Niños (o Programa Abrazos) comenzó en Colombia en 2013, después de que Ignacio visitara a familias de EH en la región rural de San Ángel, en el estado de Magdalena. Recuerdo que conocí a un niño, Olver, que había sido abandonado por sus padres y vivía con su abuela en un pequeño rancho sin...
Los pequeños gestos importan: construirle a Dilia Oviedo un mausoleo para su familia

Los pequeños gestos importan: construirle a Dilia Oviedo un mausoleo para su familia

Dilia Oviedo Güillín, mujer de espíritu y fortaleza inquebrantable, siempre soñó con reunir a su difunto esposo e hijos en un lugar donde pudieran descansar juntos en paz. Desde temprana edad, la vida le presentó numerosos retos, entre ellos una enfermedad que cambiaría su vida por completo, la “Enfermedad de Huntington”,…