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 […]

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 […]

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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 […]

Rest in Peace Darwin Soto and Maria Gotera Villasmil

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 during our Christmas celebrations in […]

In Solidarity and Gratitude

Helping in the time of COVID-19 We all know that the most vulnerable sectors of any society are always the worst hit in times of crisis. The arrival of the novel coronavirus has isolated our communities even further. The most vulnerable sectors of any society are always the worst-hot in times of crisis. The governments of both […]

Una nueva terapia molecular que elimina la expresión del gen mutado de HTT

Normalmente no me gusta escribir explicando logros de mi trabajo personal, pero esta es una publicación importante, y una publicación de la que me siento muy orgulloso. La reciente publicación en una de las revistas biomédicas más prestigiosas, Nature Medicine, atesta la importancia de este trabajo. El llegar aquí no fue fácil, y nos llevo […]

Terapias moleculares para la Enfermedad de Huntington: últimas noticias

En las últimas semanas ha habido algunas noticias en la prensa sobre la progresión en fases clínicas de varios agentes potencialmente terapéuticos para tratar la enfermedad de Huntington. Estos avances continúan llamando la atención general y de los especialistas médicos, por el sencillo hecho de que este tipo de terapias nunca se han estudiado en […]

Manuel

The image below 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, and from shame. This area […]