Abstract
This piece recounts the deeply personal journey of the author (Alex) in supporting families affected by Huntington's Disease (HD) in Barranquitas, Venezuela. The author draws a parallel between her childhood fascination with small spaces and the overlooked potential for innovation within small communities, especially Barranquitas, which played a pivotal part in the HD genetics research led by Dr Nancy Wexler in the 1980s and 1990s. The narrative details Alex's involvement with Factor-H and Habitat Luz, NGOs dedicated to aiding HD families in Latin America by providing essential resources, health support, and caregiver assistance amidst political and economic turmoil. The story highlights the challenges faced by the communities, and the emotional impact for Alex of witnessing extreme neglect. It describes Alex's leadership in establishing the Caregivers’ Programme and pursuing imaginative solutions, such as a roving caregiving team, an innovation that was recognized by the prestigious Amgen Prize for Rare Diseases. The author underscores the ongoing commitment of Factor-H and Habitat Luz to improving lives in a community where state support is minimal and caregiving often remains an invisible but vital responsibility that we all have in the era of therapeutic advancement.
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