What is Factor-H?

A non-for-profit humanitarian project to increase the awareness of people living with and affected by Huntington’s disease, to facilitate social aid to diminish the suffering of local communities in Latin America. An effort to unite socially minded individuals through creative artistic, journalistic, medical, scientific, and political means to change the neglect and suffering of those […]

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 […]

Dilia

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 future generation is beginning to […]

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 […]

Visit to Cetram and the day care center in Santiago, Chile

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. Pedro Chana. Right now, Cetram […]

Huntington’s Month in Argentina – and a concert to celebrate it!

Claudia has managed to stage an impressive array of meetings during the month of May to celebrate the people affected by Huntington’s disease in Argentina. Part of this calendar of activities include a symposium to expose the social and medical issues affecting people suffering from HD. Both Claudia and I, as well as several international […]

Brenda’s story

Brenda’s Story – as told by Claudia Perandones from Buenos Aires, Argentina I have a patient, called Daniel L., with Huntington’s disease, who is in a delicate condition because he can no longer move by himself and has to be fed by means of a gastrostomy tube. Daniel has a daughter, called Brenda, 13 years […]