Share

THE ENIGMATIC NOVEL, SET BETWEEN THE OLD WORLD AND THE NEW, WRITTEN BY EXTRAORDINARY PEOPLE SUFFERING FROM FRIEDREICH’S ATAXIA

Writers with this disease unite their talents and energies to compose a single, collaborative story.

Press release - For immediate release

May 9, 2011 – Writers suffering from a terrible disease are coming together to author a special, collaborative novel that will be sold in bookstores to collect funds for scientific research. This original literary project with a multiplicity of voices will be published to fight Friedreich’s Ataxia, a neurodegenerative disease that relentlessly affects many people worldwide and still has no cure. It is, however, a “niche” disease in which pharmaceutical companies do not invest. Resources to fund research on this disease are therefore collected from people who are either directly or indirectly affected by it and who work on a voluntary basis. This ambitious initiative was started by María Blasco, a 38 year old Spanish author suffering from Friedreich’s Ataxia since childhood. Some of the other writers from around the world who have joined the project are Fatima D’Oliveira (Portugal), Marguerite Black (South Africa), Rebecca Stant (Australia), Jamie Leigh Hansen (United States), Alessia Mainardi (Italy), Maria Pino Brumberg (Spain), Nicola Batty (UK), Claudia Parada (Mexico), just to name a few.

Each author will be responsible for one or more chapters in which they will give voice to a character of this emotional, unconventional novel that leaves room for differing writing styles. A simple plot line gives cohesion to the story, running throughout the novel like Ariadne’s thread and bringing together each writer’s creativity and personal style. A journey through space and time will reveal a mystery—a terrible secret hidden for centuries. The story begins in the middle of the 20th century in the United States and then goes back in time to 19th century Germany. Two stories in distinct times and places are thus narrated in parallel, coming together in the most unexpected way in a revealing chapter. Friedreich’s Ataxia obviously plays an important role in both stories, becoming a character all of its own.
The work will be translated into various languages by an incredible team of professional translators who voluntarily collaborate with BabelFAmily, an international organization with the sole objective of finding a cure for Friedreich’s Ataxia. Writers who wish to participate in this project can still apply. But literary contributions are not the only form of participation that the organizers are seeking. Contacting mass media as well as personalities and organizations from the worlds of culture, science, art and sport will be fundamentally important for supporting this project and getting the novel published in various countries. According to the project organizers, only through focused global awareness and this word-of-mouth approach will it be possible to reach the set goal: to make people who have never heard of Friedreich’s Ataxia aware of this cruel disease, entice them to buy the book and thus collect funds for scientific research.

To contact the project coordinators, please send an email to: coordination@babelfamily.org

BabelFAmily website http://www.babelfamily.org

English version kindly translated by Kristin Kamm