Literary Effort to Raise Awareness of Friedreich's Ataxia

In the 2nd installment of WHAT'S NEW, I'd like to bring you a guest post by María Blasco Gamarra and Gian Piero Sommaruga about a collective literary effort to raise awareness of Friedreich's Ataxia, an inherited disease that causes progressive damage to the nervous system. I had the honor to contribute to this project as an English-into-Portuguese translator, covering three chapters and about 6,000 words total. Here's more information on this initiative. 


The realization of the BabelFAmily International Literary Project

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In December 2010, Maria Blasco Gamarra, writer and someone who has Friedreich’s Ataxia, contacted the BabelFAmily Association. She wanted to share an ambitious idea with us: To write a novel with other authors from all over the world who, like her, suffer from Friedreich’s Ataxia. Profits would be donated to the biomedical research into curing the illness.

The authors could write in their maternal language, since the work would be translated into several languages by a team of volunteer translators from BabelFAmily. On her initiative, other writers got on board: Fátima D’Oliveira (Portugal), Marguerite Black (South Africa), Maria Pino Brumberg, Eva and Diego Plaza Gonzalez, Ramon Herreruela Roldán, Inmaculada Priego, Ana Pilar Tolosana, Kristina Zarrantz Elizalde and Maria Luz Gonzalez Casas (Spain), Jamie Leigh Hansen and Susan C. Allen (U.S.), Nicola Batty and Sarah Allen (UK) Claudia Parada (Mexico) and Rebecca Stant (Australia). 

Each author wrote a chapter of the book, following a simple storyline that acted as a guiding thread to bring unity to the story, but without constraining the creative freedom or writing style of each author. The story is a journey in time and space that uncovers an enigma, a terrible secret buried for more than a century.

EXCHANGING EXPERIENCES ― During the span of two years, the writers shared hopes and joys and many experiences that have enriched personal and literary experiences, but they have also mourned the death of fellow writer Nicola Batty, who unfortunately could not overcome the last crisis of Friedreich's Ataxia. "We hope that where you are now is as beautiful as your prose," fellow writers say.

Any person with feeling will be captivated by the strength and the desire to overcome of these writing enthusiasts. They seduce us with the sensitivity of their prose and the intrigue of the story. They have a solid standing and several published books behind them. They are making a titanic effort, considering that for most pressing a key on the computer is quite a challenge... 

But they carry on, despite knowing that life is fragile enough when you have Ataxia. Or perhaps, for that very reason, they realize that life is just a breath and you can’t afford to waste a minute. If they can do all this, how could we, who are fortunate enough to be healthy, not help? As people, we cannot look away. We believe we can give this worthy and proper initiative maximum exposure, the purpose of which is to help cure an illness.

THE LEGACY OF MARIE SCHLAU ― The story begins in the U.S. in the first half of the twentieth century, 1936, ingeniously going back in time to Germany in the early nineteenth century. 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 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. Of course, Friedreich's Ataxia is an important and interesting protagonist in both stories. Excitement is served up and it is not to be missed!


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MARÍA BLASCO GAMARRA is located in Spain and was diagnosed with Friedreich's Ataxia in 1985. In 2010, she proposed to the BabelFAmily Association the idea of writing a book with other people affected by the disease in order to raise awareness of the general public. She is also the author of Canciones del almaEl castillo de Albanza andBosquejando recuerdos.

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GIAN PIERO SOMMARUGA is located in Italy and acts as the President of BabelFAmily and the Coordinator of The International Literary Project Against Friedreich's Ataxia

Contact Information:

Tel.: (+34) 63 704 60 67 - (+34) 91 632 14 09
E-mail: coordination@babelfamily.org