Lundbeck was pleased to donate a large supply of tetrabenazine to the Hereditary Disease Foundation to provide to the Casa De Hogar (House of Love and Hope), a unique clinic in Venezuela that provides care for people affected by HD.
The Casa De Hogar clinic provides treatment, food, and care at no cost to thousands of family members with HD who live along the shores of Lake Maracaibo, Venezuela. Venezuela has one of the largest known families affected by HD, and HD has been in this family for generations. The clinic continues to be an important part of the HD community, serving as a model for patient care, despite extreme challenges of poverty.
The clinic was built over a ten-year period and opened its doors in 1999. It was established by the Hereditary Disease Foundation in collaboration with local Venezuelan authorities in gratitude to the families whose help was critical to researchers who identified the HD gene in 1983 and isolated it in 1993. These discoveries provided the knowledge which enables doctors to genetically test for HD, and has paved the way for the varied and promising HD research being conducted today. The clinic is now home to over 65 people and provides care and food to many more from the surrounding community.
“As we approach our fifth year of involvement with this degenerative neurological disease, we are inspired by the resilience of this local HD community and continue to look for meaningful ways to support their needs,” said Staffan Schüberg, president of Lundbeck in the United States. “We’ve provided financial assistance to the Hereditary Disease Foundation to aid the clinic over the past three years through our ‘Build Hope for HD’ online awareness campaign, and we’re proud to expand our support with this product donation.”
In total, the Build Hope campaigns have resulted in $220,000 in donations from Lundbeck. Funds have been used to renovate and update the clinic’s facilities, purchase new hospital equipment, and assist in the general day-today operations of the facility.