Search
Close this search box.
Claudia Perandones: la investigadora que no tenía ni para los libros y hoy apuesta a vencer al coronavirus

Claudia Perandones: la investigadora que no tenía ni para los libros y hoy apuesta a vencer al coronavirus

Con mucho esfuerzo personal y familiar, se recibió de médica con diploma de honor, hizo una gran carrera como genetista y coordina los equipos del ANLIS Malbrán responsables de los testeos y de decodificar el genoma del virus. La causa del Huntington, el Papa y los amigos de Hollywood. Adriana…
Farewell our dear friend and collaborator Zoraida Soto

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…

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…
Factor-H Reaches Out to Huntington’s Neglected Families of South America

Factor-H Reaches Out to Huntington’s Neglected Families of South America

  See this article written about Factor-H, from Hawken Miller, a young journalist who focuses on rare disorders. see his other articles about HD here Thank you!
In Solidarity and Gratitude

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…
Manuel

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,…

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…

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…
El Papa recibe a 200 enfermos de Huntington para acabar con el estigma de esa enfermedad

El Papa recibe a 200 enfermos de Huntington para acabar con el estigma de esa enfermedad

Recordando que «Jesús salía al encuentro de los enfermos y derribaba los muros del estigma y la marginación», el Papa Francisco ha mantenido el jueves un encuentro con doscientos enfermos de Huntington, acompañados de sus familias, investigadores y benefactores hasta un total de casi dos mil personas a las que…
Hunting for help in South America

Hunting for help in South America

With potential treatments for Huntington’s disease on the horizon, long-moot questions of responsibility towards Latin American communities are being felt acutely. But will the people who contributed to landmark research ever reap its benefi ts? Dara Mohammadi investigates By: Dara Mohammadi It’s dusk in a housing project on the outskirts…
EN