Meet Brayan – the video

<br /> 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 […]

Reflections on instilling a sense of hope

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 where in every corner one finds another person afflicted with […]

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 […]

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 […]

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 […]

New donations reaching families in El Dificl and San Angel, Colombia, via Funcovulc

Our work keeps progressing, albeit slowly, to assist impoverished families in Colombia and Venezuela. With the help of several small donations from pharmaceutical and biotech companies working in the field of HD, we were able to gather some resources to finalize our aid programs in 2016. Thank you to those organizations who have helped Factor-H. […]

Start of ‘Proyecto Abrazos’ – The Children’s Project

Sábanas de San Angel – this past April. We pulled in with Fermín’s car loaded with food, hammocks, and clothes. The scenery was arid – this region has suffered from a profound drought for a while now, and everything is dried up. The Cañahuate trees the only bright color amidst fields of dust and ochres. […]