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Latest news on Friedreich's Ataxia research
Updated results from clinical trials and research initiatives
Friedreich's Ataxia fundraising activities and staying in touch
This is the teaser for the documentary "Friedreich's Heirs" produced by Cronopia Films. Directed by Diana Nava. Get to know Maria Blasco Gamarra, the driving force behind the BabelFAmily Literary Project, and some of the inspirational writers who are involved.
Click CC on the player to select the subtitle in your language.
Paperback and Kindle versions for "The legacy of Marie Schlau" available for sale at Amazon now!
The project is the result of an initiative of Spanish people affected by this rare disease who are grouped in GENEFA in collaboration with the Spanish Federation of Ataxias and the BabelFAmily. The Friedreich’s Ataxia Research Alliance (FARA), one of the main patients’ associations in the United States now joins the endeavour.
2) Frataxin delivery research project:
The associations of patients and families Babel Family and the Asociación Granadina de la Ataxia de Friedreich (ASOGAF) channel 80,000 euros of their donations (50% from each organisation) into a new 18-month project at the Institute for Research in Biomedicine (IRB Barcelona). The project specifically aims to complete a step necessary in order to move towards a future frataxin replacement therapy for the brain, where the reduction of this protein causes the most damage in patients with Friedreich’s Ataxia.