Thank you from families who visited Pope Francis in 2017. Let’s not forget them.
A message from Maria and Anyervi Gotera from Venezuela A message from Dilia Oviedo from El Dificil, Colombia
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 […]
Factor-H and Fundación Habitat LUZ from Maracaibo start working together
MEETING BETWEEN THE MARACAIBO PATIENT ASSOCIATIONS, FACTOR-H AND FUNDACION HABITAT LUZ … THE BEGINNING OF OUR EFFORTS TO BRING CHANGE TO THE COMMUNITIES MOST AFFECTED BY HD IN THE WORLD Happy New Year 2018! On Monday December 11th, we held an all-day meeting in the offices of Fundacion Habitat Luz, a Maracaibo, University-based NGO that […]
Factor-H visits the Peruvian HD families in Cañete
For the first time, Sonia Moreno, a neuropsychologist from Universidad de Antioquia, an a member of Factor-H team in Colombia, and Nacho visited the families living with Huntington’s disease in Perú. Cañete is a province adjacent to the capital of Perú, Lima. The first HD reports in the Cañete Valley were unveiled by Prof. Cuba in […]
Manuel
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, and from shame. This area […]
Olver
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 told, is a call to […]
A WEEK-LONG GATHERING OF FAMILIES, PATIENT ASSOCIATIONS, AT-RISK YOUTH, CLINICIANS AND SCIENTISTS IN COLOMBIA, July 4-11, 2018
Factor-H organized a series of events beginning on July 4 in Barranquilla, Colombia, with the first gathering of at-risk HD youth from 5 Latin American countries, co-organized with HDYO. The meeting was a first step in identifying and training a group of young people from South America, to extend outreach efforts by HDYO to prepare […]
BRINGING MEDICAL SUPPORT TO HD CLUSTERS IN VENEZUELA
During the last couple of months, we have managed to reach a lot of patients in both San Luis and Barranquitas, the two largest communities with HD in the world. We conducted two medical assistance visits with the local HD foundations and the medical foundation Primero Auxilios. This is really a remarkable Venezuelan organization and […]
Wave Life Sciences empieza estudios clínicos con un ASO que degrada la proteína mutante
La última vez que escribí comenté sobre la gran expectativa que tenemos todos sobre los estudios a comenzar de fase 3 con una molécula de antisense (ASO) de la compañia Ionis con Roche. Los estudios de fase 2 habían concluído positivamente, la droga era bien tolerada, y se veían claros efectos farmacológicos en el líquido […]
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