María Blasco Gamarra: Yes, Friedreich’s Ataxia, because 14 of the 17 authors suffer from it.

Michell: Your group has decided to translate this book into different languages, please tell us more about that aspect of the project.

María Blasco Gamarra: Yes, the book is currently being translated into English because, in fact, it was the primary language in which 6 authors from America, England, Australia, and South Africa wrote. French, Portuguese and Italian are our next targets.

Michell: Do you believe that this project will lead to other extraordinary events in the future?

María Blasco Gamarra: Of course! No question! That is something which motivates us all. I am convinced that we have a fantastic story you can adapt to different artistic formats such as theater, cinema, music, painting, sculpture, and even television.

Michell: Outside of raising funds for the book for the cause you are currently mediating for; what other humanitarian efforts have those in the group been involved with and why?

María Blasco Gamarra: So far my challenges have been simpler and I have self-published for a small circle of acquaintances, but now I am faced with a great international challenge which will be an adventure without limits!

Michell: Since all of you struggle with the same disease what are the greatest challenges with having it. Is there anything that you would like to share with us that could help us to better understand what we outsiders can do to make a difference?

María Blasco Gamarra: Personally, I think that overcoming odds is inherent in our humanity; rather it’s a life choice that is highlighted when difficulties arise. If these difficulties are physical, the effort to overcome is more evident and the larger they are, the more important they are to overcome – as much for the person experiencing them as for the person who looks on. Being a woman also marks my character and accentuates this feature, because it’s in our blood to overcome. Throughout history, women have had to prove that their work is as worthy and deserving as any other, even more so. Today, the work of a man still has more prestige in the arts than women painters, writers, poets, sculptors … In The Legacy of Marie Schlau, 15 of 17 authors are women, this only serves to accentuate the depth and emotion in the characters of the work but at the same time, we have not neglected the action and mystery. There are times when the body, health, mood, different circumstances: time, children, work, money … do not allow us to enjoy ourselves the way we want, but we do not have to be discouraged, deflated, nor overwhelmed by this but instead we should try to find a way to carry on enjoying life: everyone in their own way, and happiness will come when it finds us.

Michell: What were some of the barriers you ran into during your project? How did you solve the issues?

María Blasco Gamarra: In a project of this nature, problems always arise and we must be prepared to overcome these, especially regarding the different languages ​​of the authors. Not only that, I would say there are communication problems on top of the language difficulties, but we overcame them because we wanted to take the project forward. A severe difficulty which I had specifically was typing an email, at the same time, coping with the progression of the illness, it became increasingly hard and it is difficult to offer literary criticism to an author with due tact so as not to hurt them while summarizing in as few words as possible. All of this is complicated even when speaking the same language, so I think it has become very clear that what is important in life is the will.

Michell: Did any of you feel you had learned some major lessons? If so what were they?

María Blasco Gamarra: A lot. The main thing is respect for difference. Respect is not easy when you do not know the circumstances of each person, this occurs in all facets of life and it is why awareness is one of our goals. It is also important that the whole group of writers has access to the same information to facilitate strategies but of course, there is the problem of each one’s personal involvement and their interest. Everything I’ve just explained is easy to put into words but it is very difficult to do. At a literary level I have also learned a lot because we had to correct authors’ other chapters – it is always easier to find faults in others than in oneself. I also learnt a lot from the diversity of styles and with regard to the use of automatic translators… well, what can you do!

Michell: What are some of the individual’s in the group’s favorite authors?

María Blasco Gamarra: My favorite authors include Isabel Allende, VC Andrews, Barbara Wood, Ken Follet, but of course my tastes may vary depending on the mood I’m in when you find me!

 

Source: Recovering the self

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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