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…

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…

It is a reality that our patients with HD in Venezuela are subsisting in an environment of great precariousness, not only due to their economic limitations but also because specialized health care is inaccessible in Venezuela, since the national public system does not operate properly. Understanding this harsh reality is…

Alex Fisher is an occupational therapist specialized in caring for HD patients from the UK; she works actively with various working groups as part of EHDN, the European HD Network. She visited for the first time the HD communities in Venezuela, together with the Factor-H team, in September 2023. Alex…

From September 6-14, 2023, Factor-H visited the HD communities in Barranquitas and San Luis and conducted medical, educational and humanitarian activities with volunteers and affiliated organizations. Below you can see a video summarizing the trip and a detailed diary of our visit.Text by Marina Gonzalez de Kauffman & Ignacio Muñoz-SanjuánVideo…

On September 3, 2023, at The Lodge Room in Los Angeles, about 200 people gathered in an evening of solidarity with HD families living in poverty in Latin America, to celebrate the contributions of many of these families to the identification of the HD mutation in the 1980s and 1990s.…

Seminario del Dr. Ignacio Muñoz-Sanjuan, fundador de Factor-h, en la reunión anual de la sociedad venezolana de neurología, el 3 de junio 2023. Ignacio habla sobre programas terapéuticos actuales para la enfermedad de Huntington, comentando información actual de todos los programas sintomáticos y aquellos dirigidos a disminuir la expresión de…

Jan Vesper, Dusseldorf University Jan Vesper spoke on the status update of the recently completed European randomized-controlled DBS trial of the globus pallidus (GP) for the treatment of HD (HD-DBS study). Prior work done in a pilot study in 2014 showed a significant reduction in chorea scores of the UHDRS.…

David Cooper David Cooper from Uniqure spoke about the current status and future plan for the first gene therapy trial for HD involving an AAV5 expressing a microRNA targeting HTT human exon-1 sequences, termed AMT-130. David described the preclinical work conducted to support the clinical trial data, in work that…

Drs. Lauren Boak and Peter McColgan (Roche) Drs. Lauren Boak and Peter McColgan discussed additional results from the tominersen Generation-HD1 phase III trial. Lauren spoke about the on-treatment and post-treatment effects of tominersen, both during the Phase III study and other studies involving this drug, with the focus of dose…