Author: Ignacio Munoz

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 […]

The story of Celia

by Tatiana Hinojosa Translated by Amanda Kauffman In My Dreams – The Story of Celia An imprisoned sigh escapes me at night, even if it looks like a game, it would steal to the chorus of a dark evening many treasures to fill your warm room with fantasies, would play eternally with its softly perfumed […]

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 […]

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 […]

A reflection based on a poem by Clint Smith

I Just listened to a TED radio podcast with poet and author Clint Smith, reflecting upon the current circumstances which evidence systemic oppression and violence against black Americans. We have all felt horror, frustration and fear in waves during the last few days. It is impossible for most of us, who did not grow up […]

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 […]

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

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 […]

Project Abrazos completes 5 years bringing hope to kids at risk for HD

The project ‘Abrazos’ (Hugs) started in 2015 and it aims to provide donations for children in Colombia and Venezuela living in families affected by HD and in extreme poverty conditions. Their family situation is dire and many of the kids have been abandoned by one of their parents. Often times, the mothers are early-stage HD […]