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 […]

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 […]

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 Atl├íntico 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 […]

Colombia April 2016 – Part 3: Stories from Juan de Acosta

Barranquilla is close to Juan de Acosta, the second largest cluster of HD patients in the world (to our knowledge). The prevalence was reported quite a few years ago by Dr. Daza in one of the few published works describing the prevalence of HD in Colombia. I had met Dr. Daza in 2013 when I […]

Colombia Trip April 2016 – Part 2

When we finally got our flight to Bogota from Quibdo, it was late at night. the plane was delayed and we did not take off until after 9pm. we landed around 11pm and we had to be back at the airport at 8am for the flight to Santa Marta. At the beginning of the trip, […]

Choco, Colombia, April 11-12. PART 1 of our Colombian Visit

Our first leg of the trip to see HD families took us to a place I had never been before. Choco is an area of Colombia bordering Panama on the North and the Amazonian region in the South. Choco has borders with both the Pacific and the Atlantic oceans, and is one of the wettest […]