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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!
Michell: There is something common among of the writers for this project. What is it?
Claudia: Most of the authors of this literary project suffer from FA or have a close family connection or friendship with someone that has it. Friedreich’s Ataxia is a neurological disease, neuromuscular, genetic, hereditary, progressive, highly disabling, which so far has no cure. It is a neurological syndrome that presents a wide range of symptoms, but not all patients have all of symptoms following the same pattern, or even the same symptom at the same level as another may have. It is called a “rare disease” or of low prevalence. A cure somewhere? Until now there is no cure but research is ongoing to find it. There are or have been several biomedical attempts to find a medication, but up to now, there is only some relief of some symptoms and possible maintenance. To date, it is hoped to find that desired cure through gene therapy, and therefore the importance of raising funds for medical research.
Michell: Your group has decided to translate this book into different languages. Please tell us more about thist aspect of the project.
Claudia: We have the fantastic representation and support from BabelFAmily Association, which has a great team of translators who carry out their translation work as volunteers. Friedreich’s Ataxia is a disease existing in countries around the world with different languages. One of the goals that is characteristic of BabelFAmily is its multilingual mission. Ataxia has neither languages nor borders.
Michell: Do you think this project will lead to other extraordinary events in the future?
Claudia: I think so and I hope so too
Michell: Outside of raising money for the book, what other humanitarian efforts have those from the group participated in?
Claudia: So far, in Mexico there is no ataxia associations. For that reason, several years ago, I set up a cyber forum to support ataxia groups in my country, with the aim of sharing and exchanging information related to the disease, encouraging the creation of friendly ties among people with ataxia from the same country. They know that contrary to what some doctors or people say, in Mexico, there is a small but representative group of the population that suffers from Friedreich’s Ataxia or another ataxia. This is not just in Europe and other countries. Due to networks changes, the cyber tools evolve, are updated and the group continues working now on Facebook under the name of “Ataxias Latinoamerica” and on the same internet site “Ataxias en Mexico”. I am also a team member of BabelFAmily International Association since its beginning
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?
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.