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Ernest / November 23, 2014
by Michell Spoden, Recovering the Self
As part of the Authors on Friedreich’s Ataxia series, I share my correspondence with another author who is part of this literacy project. Today’s guest is Sarah Allen, a 45-year-old English writer living in Spain. She is an Honors graduate in English Literature of the University of Birmingham, PGCE in primary education from Newman College, University of Birmingham. Currently, Sarah is a full-time mother of three.
Michell: Sarah, please let our viewers know about this project and how you decided to join it?
Sarah Allen: I answered a call for writers to contribute to a collaborative novel to raise funds for research into Friedreich’s Ataxia. It sounded very interesting to me – it appealed to my interest in literature, it not only has merit in its own right as a fund-raising project but it has literary merit in what it achieves. It is such a brave and bold undertaking to take writers from all over the world and unite them in one intriguing narrative.
Michell: There is something similar with each of the writers for this project. What is that?
Sarah Allen: 14 of the authors have Friedreich’s Ataxia – a progressive neuro-muscular illness which has no cure – at the moment.
Michell: Your group has decided to translate this book into different languages, please tell us more about that aspect of the project.
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!
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:
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.
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.