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Latest news on Friedreich's Ataxia research
Updated results from clinical trials and research initiatives
Friedreich's Ataxia fundraising activities and staying in touch
Participate and stay informed about our fundraising events. Take part in our Facebook community with FA patients, relatives, researchers and friends from all around the world!
This is why I wanted to create this site and include the cane in the logo, the one I use in everyday life to help me walk: to remind myself and anyone else that even though you will do things differently - you can do everything you want!
I have already mentioned in my biography that at age 18 I was diagnosed with a rare and incurable disease: Friedreich's Ataxia. What I didn't mention was how this discovery upset my plans and led me down the road I'm following now. With the onset of the disease and the progressive increase in its mobility-related problems, my plans for graduating from high school specializing in art and then going on to study archaeology - all went up in smoke. Unfortunately, this future Indiana Jones risked tripping over her whip, so I had to re-establish my life based on my new perspectives. I don't deny that it was very difficult to accept my limitations and the amount of time I spend on Cosplay illustrates just how often I need to escape from myself, to challenge my limits and get some satisfaction.
I didn't end up graduating from high school. I lost a year to depression after my diagnosis and eventually looked into how I could make up for two school-years in one and graduate with my class. I was told it would cost thousands of Euros in private courses. Graduating from high school and attending university would have only given me the ephemeral satisfaction of hanging a couple of pieces of paper on the wall, since I wouldn't have been physically able to do the profession I studied for.
My temper got the better of me and I came to terms with myself: I would be able to pursue the field I was interested in by studying on my own at home for my own pleasure, whereas for work I would chose a profession where my condition would not be a factor in any way - writing.
My oldest and most deep-rooted passion came back into my life full force between 2007 and 2008, pushing me to write my first fantasy novel "Avelion - La Figlia dell'Acqua" (Avelion - the Daughter of Water), the first of the series dedicated to the wonderful world of "Avelion" which was followed by the second volume "Avelion - Il Figlio del Fuoco" (Avelion - The Son of Fire) in October 2008.
When it came to publishing my books , I preferred to rely on my own abilities and self-publish my work through a publishing house in the province of Parma, rather than rely on the typical 'wait and hope' attitude of those who send their work to numerous well-known publishing houses hoping to be 'discovered' and published.
You can tell how much I love being independent, can't you? Well, if you want more details about my writing I recommend you visit the following website: http://www.avelion.it/ You can order my books on-line or stay up to date with events I participate in as an author, including comics conventions!
Video interview with Alessia Mainardi http://www.europapiumagazine.com/video/avelion.htm
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!
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:
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:
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.