Un resumen de los programas activos para el silenciamiento de la Huntingtina

El presidente de Factor-H expone su primera reacción y hace un primer análisis tras la noticia de la suspensión de los estudios de Fase III de Roche con Tominerse, y expone un resumen de los programas que siguen activos. Estimados amigas y amigos, esta semana ha sido una de las semanas más difíciles para toda […]

Greetings from a New Year

It is now 9:52pm in Los Angeles and it is officially my birthday in Spain. I was born at 8am on the 8th January of 1972 – 49 years ago today. As I write this, life is the USA is very complicated – we have had an attack on democratic institutions and the Covid epidemic […]

Una pastilla para tratar la enfermedad de Huntington?

Si me hubiesen preguntado hace unos años que en el 2020 empezaríamos estudios clínicos con una terapia en pastilla que trataría la causa de la enfermedad, no me lo hubiera creído. Durante mucho tiempo, desde que empecé a trabajar como científico en la fundación CHDI, he trabajado mucho en el desarrollo de terapias experimentales que […]

Nacho speaks about Factor-H at HSG conference 2020 – Insights of the Year

Intersection Desease and Poverty

On November 30th, Nacho spoke about the mission, vision, and goals of Factor-H at the 2020 conference of the Huntington Study Group (HSG), a well-known and leading clinical research organization. Nacho spoke as the Insights of the Year speaker. The conference is about 35’ long and contains some videos, followed by a Q&A session. In […]

Meet Brayan – the video

A few months ago I wrote a story about meeting Brayan, a young kid at risk for HD from Barranquitas, Venezuela (see blog post “Reflections on instilling a sense of hope”). Together with colleagues Matt Rota (https://www.mattrotasart.com) and Nicanor Cardeñosa, we put together a narrated illustrated story of that encounter. You can see the video […]

Updates on the clinical studies targeting HTT by Uniqure: AMT-130

The field of therapeutic development targeting HTT is proceeding well. In addition to the ongoing efforts by Roche and Wave with antisense drugs targeting HTT, new approaches are making their way to the clinic. Uniqure just put out a press release communicating that their clinical trial -the first of its kind, but not the only […]

In memory of our beloved Maria Fernanda Soto Santris

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 left it because of her […]

Reflections on instilling a sense of hope

Brayan now at 13, photographed by Vladimir Marcano in 2019 What is the difference between having no hope and having hope? Meet Brayan, a 13-year old boy I met when visiting the town of Barranquitas, in Venezuela, in December 2018, the last time I was able to visit. This town is a forsaken, isolated village […]

A reflection based on a poem by Clint Smith

I Just listened to a TED radio podcast with poet and author Clint Smith, reflecting upon the current circumstances which evidence systemic oppression and violence against black Americans. We have all felt horror, frustration and fear in waves during the last few days. It is impossible for most of us, who did not grow up […]

Farewell our dear friend and collaborator Zoraida Soto

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 sense of hope and confidence […]