Dr. Massimo Pandolfo. (Hôpital Erasme-Université Libre de Bruxelles, Belgium) “Current state of histone deacetylase inhibitors investigation’’.

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Dr. Daniele Marmolino. Laboratoire de Neurologie Expérimentale, Hôpital Erasme, Université Libre de Bruxelles (ULB), Brussels, Belgium. “PPARgamma agonists: potential treatment for Friedreich's Ataxia”.

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Dr. Ignacio Torres Alemán: Laboratory of Neuroendocrinology. (Institute Cajal. CSIC. Madrid) "IGF-I and Friedreich Ataxia”.

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Dr. Javier Diaz Nido. Department of Molecular Biology. Centre of Molecular Biology "Severo Ochoa" (CSIC-UAM). University Autonoma of Madrid. ”Knock-down of frataxin gene expression in human neuron-like cells as a cell model for Friedreich´s ataxia”.

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Dr. Filip Lim. Faculty of sciences. Department  of Molecular Biology Severo Ochoa. University Autónoma of Madrid. "Neuronal cell models derived from olfactory mucosa biopsies of Friedreich's ataxia patients"

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Dr. Richard Wade-Martins. University of Oxford Department of Physiology, Anatomy and Genetics.“Expression analysis of the expanded FRDA locus using high capacity genomic DNA vectors”.

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Dr. Mark Pook (Brunel University, London, UK) "Analysis of GAA instability and epigenetic changes in Friedreich ataxia using a GAA repeat-containing FXN transgenic mouse model".

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Dr. Salvatore Adinolfi (Annalisa Pastore’s team) "Frataxin is the gatekeeper of Fe-S cluster formation"

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Dr. Jonathan Jones. Institute of Neurosciences. University Miguel Hernández. San Joan Campus. Alicante. "Cellular therapy as a neuroprotective therapeutic approach in ataxia: experimental studies in animal and cellular models"
 

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Dr. Francisco Javier Arpa. Department of Neurology. Hospital La Paz.- Madrid. “Clinical trials in adults with Deferriprone, idebenone, Riboflavin, IGF-1”

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Dr.Mercedes Pineda. Neuropediatrics. Sant Joan de Deu Hospital. Barcelona. “Treatment with idebenone and deferiprone in Friedreich ataxia patients”

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Dr. Giuseppe De Michele. Dipartimento di Scienze Neurologiche. Università Federico II. Náples. Italy. “Erythropoietin and Friedreich ataxia: preliminary results of a phase II open-label clinical trial”

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Dr. Pierre Rustin Hopital Robert Debre, Paris. France. "Pioglitazone in FRDA: Why and How?

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The legacy of Marie Schlau: literature to help cure Friedreich's Ataxia

If you feel like reading an unputdownable novel while collaborating with a just and solidary cause, "The Legacy of Marie Schlau" is your book! 100% of all funds raised will be dedicated to medical research to find a cure for Friedreich's Ataxia, a neurodegenerative disease that affects mostly young people, shortening their life expectancy and confining them to a wheelchair.

The life of Marie Schlau, a German Jewish girl born in 1833 hides great unsolved mysteries: accidents, disappearances, enigmas, unknown diagnoses, disturbing murders, love, tenderness, greed, lies, death ... alternatively a different story unfolds every time and takes us closer to the present. Thus, there are two parallel stories unravelling, each in a different age and place, which surprisingly converge in a revelatory chapter.

Paperback and Kindle versions for "The legacy of Marie Schlau" available for sale at Amazon now!

https://www.amazon.com/Legacy-Marie-Schlau-collective-Friedreichs-ebook/dp/B01N28AFWZ

 

Research projects currently being financed by BabelFAmily

Currently, BabelFAmily is financing two promising research projects aimed at finding a cure for Friedreich's Ataxia. Whenever you make a donation to us or purchase a copy of "The legacy of Marie Schlau", this is where all funds raised will be devoted to:

1) Gene Therapy for Friedreich's Ataxia research project:

https://www.irbbarcelona.org/en/news/international-patient-advocates-partner-to-fund-spanish-gene-therapy-project-to-treat

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:

https://www.irbbarcelona.org/en/news/new-research-front-to-tackle-friedreichs-ataxia
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.

The study is headed by Ernest Giralt, head of the Peptides and Proteins Lab, who has many years of experience and is a recognised expert in peptide chemistry and new systems of through which to delivery drugs to the brain, such as peptide shuttles—molecules that have the capacity to carry the drug across the barrier that surrounds and protects the brain. Since the lab started its relation with these patients’ associations in 2013*, it has been developing another two projects into Friedrich’s Ataxia.

 

 

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