Three books in three years. It must have been a huge effort, but also a great source of satisfaction.

Well, hard work, yes; but as it has been something I have done voluntarily, the effort becomes more bearable, and now that I can see the big day of the launch practically upon us, I feel as if a little caterpillar were crawling about inside me, leaving a trail of nervousness, longing and excitement, making me feel like a child on Christmas Eve. It’s a very nice feeling; the bad times and the weariness from all the effort disappear, and my mind is filled only with what is to come.

And the three books have all been different, a novel, a book of poems and now a children’s play. Do you need to take on new genres, new challenges?

El Castillo de Albanza is not so much a play as a fictional short story, and although principally aimed at children of around 10 or 11 years old, is an enjoyable light read for adults too. I would say that El Castillo de Albanza is written along the same lines as Bosquejando Recuerdos,(Sketching Memories) where childhood acquires the utmost importance. It is not that I need to take on new challenges, but challenges come to me, and I seize them without any fear. Sometimes, I even surprise myself with how assured and confident I can be when it comes to embarking upon different challenges. A good example of this is the new project I am behind. I had previously thought of translating the book into English and Basque, although  I certainly did not have enough money to print on paper, so I chose to donate the digital versions to BabelFAmily (a society supporting sufferers of Friedreich's ataxia). As a result of that, they suggested to me that we promote the story in the English-speaking world and translate it into different languages.

How did the idea for ‘El Castillo de Albanza’ come to you, and what are you telling us in this story?

I had in mind to write a children’s book in which I could take pleasure in the medieval and historic times of our land, and at the same time I did not want to situate it in any concrete geographical place. I began to write and to research historical subjects and the tale simply told itself.

What has the writing process been like?

Fortunately I wrote this story two years ago and before publishing it I have only had to revise it, edit it, re-edit it and then edit it again many times over. In addition, the story is short and I remember that it did not take me more than three months to write, so that’s why I say 'fortunately', because nowadays I would not have been able to write it without any help. Over the last few years I have stopped using voice recognition programs because they no longer recognize the words I vocalize. My difficulty when it comes to vocalizing has increased owing to the condition I suffer from, Friedreich’s ataxia.

I believe you’ve prepared a very special launch for Monday.

In truth, I’ve been organizing this launch since January, as my launches are a huge celebration for me, where I try to get all my friends and readers together. Marta Juániz already collaborated with me by reciting a poem from Canciones del Alma, my book of poems, and as a result of that, I started to form the idea in my mind of a theatrical performance. I suggested this to her and she agreed, so I started to write a monologue based on the feelings and emotions of Berenguela, an 11th century princess from Navarre, the protagonist of the medieval legend (of my own invention) that serves as a backdrop for the story. There are more surprises to come at the launch, such as performances by Leyre Arraiza who will be hosting the evening; Javier Erro and Saioa Paternain who will be singing; the band of street musicians, Armonia, with Rafael González, one of the best voices in Navarre for jota, and further guests such as Patxi Zabaleta who wrote the book’s prologue, Elionel Barker who translated it into Basque and Txema Maraví who illustrated it.

What expectations do you have from this book?

Quite frankly, I don’t have any expectations. When I started writing, yes, I set myself the challenge of the three books, one each year. It was a self-imposed task: it was my goal. Now my situation has changed, and of course I continue to give myself goals, but at a more relaxed pace, because I know that I am no longer reliant upon myself alone and that I need to count on the help of others who type for me.

Indeed, one of your next projects, which you are already working on, is The Legacy, a collective novel written over the internet that I believe is your initiative. What does this project consist of, what is the writing process like and how many people are participating?

I am very excited about the new project, because, as well as its ambitious scope, it has enabled me to forge new friendships with people from different countries. My principal aim was to write a novel between several authors from all over the world who suffer from Friedreich's ataxia. Each author writes one or two chapters in their mother tongue under a few basic guidelines, established by me, although they are completely free to suggest any new ideas that might enrich the novel. To do this I got in touch with BabelFAmily, a society supporting sufferers of Friedrich’s ataxia that handles the translation into various languages of information relating to trials and studies on the condition, as well as sponsoring various biomedical research projects. I also suggested to them that the money raised from the sale of the novel could be used to pay for research projects into the condition. Little by little, we got the project underway, whereby various authors joined (by chance, we are all women) from Australia, South Africa, United Kingdom, United States, Mexico, Portugal, Italy and Spain.

What does the future hold for the book, are you thinking of publishing it?

Publication is something that the team will decide upon, although we intend for a large publishing house to take charge of the novel’s distribution and promotion. Within the network we have a closed group of writers and translators, via which we contact one another to make suggestions, have discussions, and so on. In terms of the time we anticipate before the book’s launch, if everything goes the way it has until now, it could be finished by the end of 2012; but with this novel it won’t be me who is in charge of the launch. I imagine that it will take place in Madrid.

Lastly, Maria, do you think that these works that you are launching may also serve to make all of us reflect upon the fact that, if we strive for something, we can achieve whatever we put our minds to? Have you achieved what you set out to do?

It makes us reflect upon many things, not only that - which of course is important - but also because it serves as an example to other people with a physical disability. It makes you realize that, however many difficulties you may have, there is always another way... As for me, I cannot say that I have achieved what I set out to do, only that I am doing it right now: I am enjoying the present moment. I do not think about the past or the future: come what may, there I will be, looking for the chink of light or the vantage point so I can make the most of that moment of happiness.


Source: Noticiasdenavarra.com

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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