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 this piece, which I hope illustrates many of the problems common to HD communities in Latin America. The piece also raises some potential areas for intervention, some of which we are trying to tackle.
Progress has been slow, but we are not giving up. It is going to take a lot of effort, money, and persistence to see real changes. The problems are simply too many, and those who are willing to help too few, and without enough resources. But there is hope... as more people know about our mission, more likely that large scale projects will be launched. Our current emphasis has taken us in two directions, the first is at a local level, working on two communities, one in Colombia and one in Venezuela, with other Foundations, to start HD community development projects. We want to create sustainable development communities which benefit the entire region, but whose mission is to create an environment of care, respect and dignity for HD families. In a parallel tract. we are working on National level projects in the areas of education, reproductive health and social justice, for all families in Colombia. My goal is to achieve some of these objectives, which can become a point of reference for other efforts in other countries, and for other communities affected by genetic disorders.
Thank you for reading the piece. It's a bit lengthy, but I think it covers many of the issues taht keep me awake at night, and driven to help.