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 […]
Noticias sobre el estudio de Ionis/Roche con oligonucleótidos para el tratamiento de Huntington
Recientemente ha habido mucho interés en los estudios realizados por la compañia de California Ionis, en colaboración con la farmacéutica Roche de Suiza, en pacientes de Huntington. Su droga, un compuesto nuevo llamado HTT-Rx, es una molécula de ADN de la clase de fármacos llamados oligonucleótidos antisentidos, debido al hecho de que contienen una secuencia […]
Living on the street with Huntington’s
Today’s “life stories” brings us to a very difficult and sad place, but one that unfortunately exists. Many people with Huntington’s end up abandoned on the street. Whether left by their families or due to psychiatric issues that arise from the disease itself, young HD affected persons sometimes end up living on the streets. The […]
A letter from a scientist
I am enclosing here a piece I wrote during a lengthy period in 2015, which led to the publication in Nature of a short article about the issues surrounding the Latin American HD communities. I am attaching it in its entirety here. The Nature commentary was a shortened version of this piece, which I hope […]
Dilia
Dilia Oviedo Oviedo is 79 years old. She had 12 children. One was stillborn. Of the 11 children that survived to adulthood, 4 already died from Huntington’s disease. 4 more are currently sick with HD, 2 in late manifest disease. Her husband died in the early 90s, and now a future generation is beginning to […]
Meeting with Pope Francis at the Vatican May 18, 2017
Factor-H is pleased to announce a private audience with Pope Francis at the Vatican on May 18, 2017 (11am) to honor Latin American families affected by HD
Roberto
I met Roberto and his family when I visited them in April in Juan de Acosta, in the Atlántico State of the Colombian Caribbean coast. Juan de Acosta was considered the second largest HD cluster in the world, although many affected families have left the town in the recent years. We visited his family as […]
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