Uniqure’s AMT-130 Phase 1/2 trial – a reflection
Yesterday, Uniqure reported on the 24-month results of their Phase 1/2 clinical trial with AMT-130, a viral gene therapy trial for HTT lowering for the treatment of HD. See the links to the press release and investor call slides. I wanted to review some aspects of the claims made by Uniqure, and put them in the […]
State of Therapeutic Programs
From a gene mutation to a lethal disease HD is caused by a single mutation in a region of the HTT gene, located at the beginning of the gene (in exon 1), which contains a repeat sequence comprised of CAG repeats; in the normal range, people have between 17-22 repeats on average; in HD individuals, […]
Reflections on a visit to Zulia
Team work and scientific education Every year, Factor-H Vice President Roger Cachope and I visit the Colombian & Venezuelan communities at least once, and over time we have developed a close relationship with many of the HD families we support. These visits are particularly important for me, because they allow me to see first-hand where […]
The Legal Assistance program in Colombia
Factor-H offers a free-of-charge legal assistance service in Colombia, with the sole objective of facilitating access to the services, medicines and supplies that the Colombian State ensures to all patients affected by Huntington’s disease. Factor-H aims to assist all HD families with navigating the complex landscape of accessing medical benefits & medications, which often can […]
Factor-H and Familias Huntington Peru association bring assistance to vulnerable Peruvian HD families
Factor-H has been supporting and working alongside the Peruvian association for several years now. The region of the Cañete province constitutes one of the largest clusters of HD in the world. The association is supporting the needs of 49 families afflicted with HD and a total of 80 patients. During the month of April, the […]
2024 Gratitude Day – a celebration of community
Gratitude day 2024 brings hope to Venezuela The importance of the contributions of the Venezuelan families to HD research and disease understanding cannot be minimized, even with the passing of time. The journey of these families in advancing our scientific and medical work started in the 1970s, after the presentation of Dr. Avila-Girón in 1972 […]
HD in the News: EHDN March Newsletter
In the recent EHDN Newsletter, Factor-H work is featured in two articles – the first launches the 2024 Gratitude Day campaign; the second is by Alex Fisher, who tells her story of coming to Venezuela and the work she is conducting together with Factor-H & Habitat LUZ in Maracaibo to launch a comprehensive caregiver program […]
Gratitude Day: Celebrating the Anniversary of the Discovery of the Huntingtin Gene
Gratitude Day Donations! See a summary video of Factor-H and collaborators programs in Venezuela in 2023 On March 23, 1993, a landmark Cell article was published, describing that the mutation in the gene responsible for Huntington’s disease had been identified for the first time. This discovery was possible thanks to the collaboration between scientists from […]
Health campaign to support the HD community in Algarrobo, Colombia
The Health Day, conducted on September 26, 2023, was aimed at children and adolescents belonging to the EH community in Algarrobo in the department of Magdalena, as a collaboration between Factor-H, the University Metropolitana (Barranquilla), University Area Andina (Valledupar), Colegio el Carmen and GREMCAN S.A. (a Colombian occupational heath NGO). The Universidad Metropolitana volunteer department […]
Miner band performs in LA a concert to benefit Venezuelan HD families, September 3, 2023
On September 03, 2023, Miner band will perform at The Lodge Rooms in Los Angeles, a benefit concert to raise funds for Venezuelan families affected by Huntington’s disease, as a way to thank them for their contributions to the identification of the mutation that causes HD in 1993. Miner is a folk-rock, family band based […]
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