We are very fortunate at Factor-H to count on the friendship and talent of amazing individuals working in the visual arts. Over the years, documenting the lives of people with Huntington’s disease in their communities has been essential to our mission – if we can’t capture the humanity behind the…

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,…

I am enclosing here a piece I wrote during a lengthy period in 2015, which led to the publication in Nature of a short article about the issues surrounding the Latin American HD communities. I am attaching it in its entirety here. The Nature commentary was a shortened version of…

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…

My first – unexpected – science lecture for medical students in Barranquilla, Colombia 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…

In April of 2013 the CHDI Foundation will host its 8th Annual Therapeutics conference, this time in beautiful Venice, Italy. I will be chairing a session entitled ‘from the beginning: what developmental systems tell us about HD’, together with Dr. Elena Cattaneo, who is one of the HD scientists working,…

  Its almost time to visit Colombia! Here is the link to the meeting we will be participating it at the end of the 2 week trip to visit the Colombian Communities. I hope we will have a positive impact for the patients, their families, the physicians and the regulatory…

The situation in Venezuela is dire. Our local physicians are leaving the country if they can, as it is becoming increasingly difficult to live there. They cannot provide medications for their patients. Getting basic amenities and food is getting harder. The situation in Maracaibo is frankly terrible – I have…

in 2015, we were able to raise US $20,000 in donations from pharmaceutical companies, which is being allocated to a variety of projects in Colombia. The goal is to help the neediest families as well as invest in longer term projects, such as the creation of an audio-visual guide to…

Claudia and I just returned from a wonderful trip to Santiago de Chile. We spoke about our work in Enroll-HD (together with Cristina Sampaio and Joe Giuliano from CHDI and Bernhard Landwehrmeyer from Ulm) and the current therapeutic strategies. Cetram is a wonderful center for movement disorders, headed by Dr.…