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…

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…

AcolpEH just launched a new campaign called ‘Hugs’ – to raise funding towards the benefit of Colombian families, as well as to start fundraising to build a care center for the affected families https://www.youtube.com/watch?v=wABsvfEPT2E Please go and donate- right now the video is in Spanish but translation will come soon…

AcolpEH, the national HD patient association based in Bogota has been working with Factor-H for a few years in trying to develop aid programs to benefit the many affected families in Colombia. Based in Bogota, AcolpEH’s founder Janeth Mosquera issued a video recently where several of the families who received…

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.…

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,…

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…