In August 2025, occupational therapist Alex Fisher made a journey to Barranquitas, Venezuela, where she met a 10-year-old girl named Jade living with Huntington’s disease. Despite promising to return in December, Jade tragically passed away before Fisher could fulfill her promise.
Huntington’s disease (HD) is a hereditary brain disorder that gradually affects movement, cognition, and behavior, ultimately leading to fatality. The disease, caused by a genetic mutation, has no cure or effective treatments currently available.
To better understand HD, researchers established a long-term partnership with families in Venezuela, particularly around Lake Maracaibo. This collaboration led to significant breakthroughs, including the discovery of the HD-causing gene. The contributions of Venezuelan families have been essential in advancing research in the field.
Life in Barranquitas, a remote fishing village, is challenging due to poverty and limited access to healthcare and basic amenities. Many residents, particularly children, bear the responsibility of caring for family members with HD, making their struggle even more arduous.
Factor-H, an international nonprofit founded by Dr. Ignacio Muñoz-Sanjuán, works with HD families in Barranquitas through its Caregivers’ Programme. This innovative initiative earned recognition for supporting rare disease families and has been a lifeline for those in need.
As advancements in HD treatments offer hope, the question arises whether these breakthroughs will reach communities like Barranquitas. Deliberate efforts and collaboration are necessary to ensure that those who contributed to HD research benefit from the progress made.
Gratitude Day, commemorated on March 23rd, honors the resilience and partnership between families, scientists, and healthcare professionals in the fight against HD. This year, Factor-H will livestream from Venezuela, providing a glimpse into the work being done in these communities.
Despite the challenges faced by the HD community, there is an opportunity for unity and progress. By acknowledging the valuable contributions of Venezuelan families and supporting initiatives like Factor-H, we can work towards a better future for those affected by HD.
