Three decades of caring for the Venezuelan Huntington's disease families

738 www.thelancet.com/neurology Vol 12 August 2013 a uniquely dedicated person who has devoted the past 25 years of her life to the Huntington’s disease community. Working with her are two dedicated and highly trained nurses. They have been exceptionally loyal and committed, doing very diffi cult jobs for more than 14 years. The core staff of the Casa Hogar consists of 30 auxiliary nursing staff , all of whom are family members of people with Huntington’s disease. We require that only such individuals serve as staff . They know how best to take care of their mothers, fathers, and children, who live with dignity in the Casa Hogar. They understand and intuitively know how to care for the complex array of problems that confront every patient. Families of people with Huntington’s disease are ostracised by the wider community, and cannot fi nd work. Working with us provides an income and safe haven if they become ill in the future. Ours is the only nursing home in the world where staff are required to be from families of people with Huntington’s disease. We provide the full salary for Margot de Young, the two nurses, and 30 staff members of the Casa Hogar, totalling almost $750 000 annually. Including drugs and food, we provide almost $1 000 000 annually to cover the home’s expenses. Several videos about our work at the Casa Hogar have been produced, including a piece from the British Broadcasting Corporation’s Newsnight programme, “Venezuela village key in search of Huntington’s cure”, which can be watched online. We are in the midst of fundraising to secure additional resources for the Casa Hogar and other research activities. Details of our work can be found on the Hereditary Disease Foundation website.