Visit to San Luis and Barranquitas in December 2018
video narrated by Nacho, produced by Gindel Delgado
December 2018 visit to Venezuela - video narrated in Spanish by Gindel Delgado.
factor-h in the PRESS
EHDN Newsletter article about Factor-H work in Venezuela - pages 8-9
Clinical Neurology News article about Factor-H First Latin American Conference, held in Barranquilla, Colombia (2018), by Jennie Smith
The Nature commentary (Nature: 531, Page 10, March 2016)
The Guardian/The Observer article by Dara Mohammadi, May 15, 2016
The Lancet Neurology article (The Lancet, Volume 12, Issue 2, February 2013, Pages 133–134)
The legal commentary from Monica Roa. Ambito Juridico, July 2016 (in Spanish)
Dara Mohammadi’s article including Factor-H work in Colombia at the Lancet Neurology, July 2016:
Adrian Burton article about Factor-H, The Lancet Neurology, February 2013:
Factor-H co-organized the recent Papal audience in solidarity with Latin America
Ignacio and Claudia lead the HDdennomore campaign to end stigma for HD
LINK - Pope Francis' 18-May 2017 speech to HD families translated into English and Spanish
links - coverage of the Pope audience in the Vatican on May 18, 2017
Catholic News Agency Pope’s historic meeting with Huntington’s patients offered ray of hope
Catholic News Agency Pope Francis to Huntington's patients: You deserve respect and love
Noticias - audiencia con el Papa Francisco
prensa en español, conferencia en Barranquilla, julio 2018
Noticias sobre la primera reunión Latinoamericana de Huntington, Barranquilla Julio 2018
ADN Barranquilla article
Noticias.com article describing participation of the Atlántico province governor at the event
Diario La Libertad article about the conference
Oculta Nunca Más, blog by Eduardo León
LINKS to other HD organizations
International HD Patient Association – www.huntington-assoc.com/
Huntington’s Disease Society of America – www.hdsa.org/
HDBuzz – www.hdbuzz.com/
HD Youth – hdyo.org/
Support communities involved in disease studies
Lack of continued help for poor families involved in Huntington’s-disease research has sown resentment and mistrust, says Ignacio Muñoz-Sanjuan 08 March 2016 - © 2017 Macmillan Publishers Limited, part of Springer Nature. All Rights Reserved.
After decades of research, a genetic therapy for Huntington’s disease is being tested in clinical trials. Sponsored by Swiss pharmaceutical firm Roche and US-based Ionis Pharmaceuticals, this trial targets the gene that causes the disease. If the new treatment works, it could offer a way to halt progression of this genetic disease — an awful neurodegenerative disorder that attacks mainly the brain. Huntington’s is caused by a single gene mutation transmitted in a dominant fashion, so a child has a 50% chance of inheriting the condition if one of their parents carries a single copy of the defective gene.
Huntington’s disease: the new gene therapy that sufferers cannot afford
Efforts to treat Huntington’s disease involve costly drugs way beyond the reach of the poor communities in South America who take part in research studies. Dara Mohammadi Sunday 15 May 2016 - © 2017 Guardian News and Media Limited or its affiliated companies. All rights reserved.
As the small motorboat chugs to a halt, three travellers, wind-beaten from the three-hour journey along the Atrato river, step on to the muddy banks of Bellavista, an otherwise inaccessible town in the heart of the heavily forested north-west of Colombia. They swing their hessian bags – stuffed with bedsheets, dried beans and cuddly toys – to their shoulders and clamber up a dusty path. Tucked inside the bag of one of the travellers, neuropsychologist Sonia Moreno, is the reason they are here: a wad of unfinished, hand-drawn charts of family trees.