The Dancing at The Vatican Documentary

Dancing at the Vatican

With over 20,000 views, Dancing at the Vatican documentary has been a success, and we hope this film has inspired people. We remember with fondness the trip to the Vatican and remain thankful for the words and warmth Pope Francis delivered to the HD community. The documentary is subtitled in several languages including Spanish and […]

Letter from the President

2020 was a year like no other. The global Covid-19 pandemic impacted the entire world, but it has taken a heavy toll on poor communities around the world. Most of the families we assist live in vulnerable conditions, and their access to employment and medical assistance were significantly impacted.  We reacted to these challenges by organizing […]

Greetings from a New Year

It is now 9:52pm in Los Angeles and it is officially my birthday in Spain. I was born at 8am on the 8th January of 1972 – 49 years ago today. As I write this, life is the USA is very complicated – we have had an attack on democratic institutions and the Covid epidemic […]

Nacho speaks about Factor-H at HSG conference 2020 – Insights of the Year

Intersection Desease and Poverty

On November 30th, Nacho spoke about the mission, vision, and goals of Factor-H at the 2020 conference of the Huntington Study Group (HSG), a well-known and leading clinical research organization. Nacho spoke as the Insights of the Year speaker. The conference is about 35’ long and contains some videos, followed by a Q&A session. In […]

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 […]

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 […]

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 […]

New article about Colombia and Factor-H in the Lancet Neurology

Dara Mohammadi just wrote a final piece from the trip we took together to Colombia in April 2016. You can find the pdf of the article here: HD Colombia Lancet Also read about Enroll-HD efforts here: http://www.enroll-hd.org/ Please note that even though efforts to initiate Enroll-HD are underway in Colombia, the project has been running […]