This confirms the value of using various languages to widen our reach, so as to include those who not only suffer from this devastating disorder, but who also have had to deal with limited access to needed information due to the language barriers present on the Internet.  BabelFAmily has been working hard to break down these language barriers since June 2006, when our organization was first launched as a mailing-list.  As our team has grown, we have dedicated ourselves to serving those who don’t speak English, along with those who live in areas of the world such as Russia, Turkey, or many Arabic-speaking nations, for example, where no FA associations exist, and where families often feel completely isolated from information and support.  Friedreich’s ataxia is a “rare disease”, but it speaks many languages.  Through the vehicle of our website’s various languages, we will continue to provide information to the worldwide FA community about the progress being made to defeat Friedreich’s ataxia, seeking to bring hope, and making our own contribution, as we work alongside other associations, to achieve the shared goal of defeating FA as soon as possible.

Perhaps most importantly, 2009 was the year in which, newly constituted as an association, BabelFAmily has become more than a valued information source, and is now also raising and distributing funds for biomedical research into FA.  We have recently coordinated the collaboration of six other ataxia associations (ACHAF in Switzerland, AISA in Italy, APAHE in Portugal, Ataxia UK in the United Kingdom, FASI in Ireland, and FARA in the United States) to co-finance a research project on Friedreich’s ataxia being conducted by Prof. Pierre Rustin of the INSERM in Paris.  This marks the first success achieved by BabelFAmily on the research front, where our primary objective is that no promising research project should go unrealized for lack of funding.  In this sense, dialogue between various associations helps us all reach our goals sooner.  For 2010, we plan to focus energy on fund-raising through various initiatives, involving patients, families and volunteers from all over the world.  In order to achieve our fund-raising goals, we have also activated an online donations page which can be reached through our website at www.babelfamily.org .  Our motto is and will remain, “Let’s press on to cure Friedreich’s ataxia!”

Gian Piero Sommaruga,
President of BabelFAmily Association

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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