It wouldn’t be very useful to say anything because I’ve never been very disciplined myself. However, what is plainly clear to me is that as my illness has progressed – and everything has become more difficult, my personality has changed. The more limitations I have, the greater my challenges become and the more demanding I am towards myself. In this way the sense of achievement helps me overcome obstacles.
 
Are self-imposed limitations due to fear, embarrassment, shyness… worse than the real ones?

The self-imposed limitations are as real as the physical ones; it’s just that when you have to battle against a physical barrier, the mental barriers appear bigger as well. I say this because when I was younger (and had less limitations), I had the same ambition. However, due to one thing or another I never seemed to find the right moment or enough drive, to make my dreams become real and not just mere illusion. Nobody would give me anything so I needed to gather courage and conviction.

And what other dreams does María Blasco have?

I’m an inveterate dreamer. As soon as I achieve a dream, another one begins to forge, occasionally even before the previous one has come to fruition. Now what I want is for people to read and enjoy my writing; that they value somewhat the talent I think I have. If I decide to publish, even with no financial support, it is because of the conviction that my book is good. I am the first one to have faith in myself, although I too want the recognition of the public, just like any artist, right?

You say the publication of your first novel "Bosquejando recuerdos" (Sketching memories), was all down to obstinacy, precisely because you had no support or grant. How brave, considering the current situation!
 
 María Blasco

Indeed, I have not managed to obtain the grant I applied for this time, my second book – the book of poems “Canciones del alma" (Songs from the soul) – hence I’ve been forced to opt for a more economical format. This has not prevented me from fulfilling my dream; something much more serious would have to happen to stop the launch of ‘Canciones del Alma’ from taking place on November 15th as planned.

What are you offering us with this new work?

I go for feelings and simplicity in a series of poems of varied nature; from romance to sonnets or more complex texts. I advise the poems to be read aloud, savouring each word for poetry is meant to be heard.


Many friends have helped in its making. The painter from Bilbao Marisa Ortega has illustrated the poems and artists and sports people of the calibre of Kepa Junkera, Edurne Pasaban, Martín Gervasoni, Jordi Roselló, Alejandra Botto or Aurora Beltrán... have lent their voices. What a luxury!

Yes, overall for their support, which will enable the book to achieve a greater impact. Their participation is extremely valuable for me because each one of them has contributed a little in order for this beautiful project to see the light. Regarding Marisa Ortega’s illustrations, all I can say is that they are awesome, you just have to see the cover of the book, it is gorgeous! The sensitivity arisen by the poems is dotted with the beauty of the work by this great artist. You can’t miss it.

When you were diagnosed with Friedreich’s ataxia in 1985 you were still a child. Can you learn to live with such an illness?

Learning…you never stop learning; being a degenerative illness, problems evolve. Fortunately I have a positive disposition by nature that helps me to live with this condition, which is really hard. It’s sad to see how your body, your muscles… gradually lose strength until they turn you into a person who keeps her mental capacities perfectly, but loses control of her body, that doesn’t respond or obey her any more. It is also complicated by becoming totally dependent after having been independent; this is something I still cannot get my head round.

How does ataxia condition your life?

When the illness isn’t too advanced it features less in your life but when it becomes more serious, you already have problems that prevent you from having a normal life. Simple stuff, such as going to the toilet, getting into bed, doing manual work… Then it starts to take centre stage, although in my case you fight and battle for it not to be that way. To write, publish and organise the launch of my work helps me to come out triumphant from these battles.

What does the future hold for you?

I would rather not think about it. When it comes, I aim to be ready to face it. I don’t know whether it’s an advantage, but my illness forces me to live in the present and enjoy it as much as possible.


 Source

Link to the video related to Maria's presentation of her second book

http://www.eitb.com/videos/noticias/sociedad/detalle/542287/maria-blasco-sufre-ataxia-friedreich-publica-su-segundo-libro/

Another beautiful video related to Maria's presentation, published on You Tube

http://www.youtube.com/watch?v=Vpprzb6YEVE 

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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