Joomla gallery extension by joomlashine.com
Main Promo Images
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!
Here are a few suggestions:
Help find a cure for Friedreich’s ataxia
Raise funds for FA research and patient services.
--Organize your own local fund-raising effort (Here we might append or link some of the lists of fundraising suggestions found on FARA, MDA, NAF, Ride Ataxia III, FAPG websites etc...)
--Make an online donation to babelFAmily.
Help keep the BabelFAmily website fresh and interesting
--Submit your personal story and a photo to be published on our “Personal Stories” page
--Share your photos on our “Photos” page (be sure to label who/when/where)
--Share your videos about life with FA, new equipment you’ve found useful, etc. on our “Videos” page
--Visit our “Forum” and join the discussion that interests you
Help our translators keep the information flowing
If you write well in your own language and read another language fluently, join our small but growing number of volunteer translators. We try as much as possible to only ask our volunteers to translate INTO their own maternal language, to ensure the clearest and most accurate translation possible. We would like to have more than one translator for each language. We especially need translators for Eastern European and Balkan languages and Arabic. The work is done entirely at the pace each translator is able to keep.
Help us keep the information up-to-date
Send interesting articles from medical journals and online information services, the popular media, and newsletters from organizations which deal with ataxia
Help keep our forums going in various languages
In order to have a forum in each language, we will need a moderator for each language. Perhaps you can’t translate, but you could moderate the forum for your native language. Moderators make sure the discussion stays civil in tone, follows “rules of engagement”, and stays on topic. They may propose new topics from time to time to keep communication flowing.
Help us improve
Let us know about errors you may find on the website so that we can make corrections.
Help us reach others
--Encourage your friends to visit our website and to subscribe to BabelFAmily.
--Put a link to this website on your ataxia-related website, or send out the link through your mailing list or newsletter.
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.