Article by Monica Roa – a lawyer working with Factor-H to protect the rights of the patients in Colombia

A couple of months ago, I met Monica Roa in Washington DC to discus whether we could team up to deal with the issues facing many of the Colombian families – the lack of institutional and government support, the refusal by many of the insurance companies (called EPS in Colombia) to provide them with palliative […]
Start of ‘Proyecto Abrazos’ – The Children’s Project

Sábanas de San Angel – this past April. We pulled in with Fermín’s car loaded with food, hammocks, and clothes. The scenery was arid – this region has suffered from a profound drought for a while now, and everything is dried up. The Cañahuate trees the only bright color amidst fields of dust and ochres. […]
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, […]
New campaign to sponsor kids growing up in vulnerable HD families in Colombia

Today we started a new campaign to help children living with HD in Colombia. see attached link please and spread the word! to Donate, please click here for Project Abrazos for HD Also see an explanation of the program. Thank you and I hope that together we can help these children grow up with a […]
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 […]
Huntingtin and brain development
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, among other things, in understanding […]
Primer Simposio de Enfermedad de Parkinson, Huntington y Enfermedades Huérfanas
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 authorities. The beginning of Enroll-HD […]
Venezuelan communities in Maracaibo need HELP
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 been told that in Barranquitas, […]
Upcoming visit to Colombia in April
Our next trip to visit our Colombian friends and HD family is happening soon- from April 10-24, 2016. We are planning on going to Choco, Santa Marta, Juan de Acosta, Barranquilla, Medellin and Bogota. This time around, our friend and English journalist Dara Mohammadi (see his page!) from the prestigious newspaper The Guardian, will be […]