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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!
Associations dedicated mainly to Friedreich's Ataxia
Associations dedicated to all kinds of ataxia
Communities and forums on the Internet
Here is the list of associations and communities displayed:
Argentina: ATAR (Asociación de Ataxias de Argentina)
Australia: FARA (Friedreich's Ataxia Research Alliance) Australia, MDA (Muscular Dystrophy Association)
Belgium: Offrez-moi la lune, ABAF (Association Belge de l'Ataxie de Friedreich), VLAF (Vlaamse Liga van Ataxie van Friedreich), EuroAtaxia (International headquarters)
Brazil: ABAHE (Associaçao Brasileira de Ataxias)
Canada: ACAF (Association Canadienne de l'Ataxie de Friedreich), Internaf (International), British Columbia Ataxia Society
Chile: Ataxia en Chile
Cuba: CIRAH (Centro de Investigación y Rehabilitación de Ataxias Hereditarias)
Ecuador: ASAE (Asociación de Ataxias de Ecuador)
Finland: MS-Liitto Suomi
France: AFAF (Association Française de l'Ataxie de Friedreich)
Germany: DHAG (Deutsche Heredo-Ataxie Gesellschaft)
India: SAM (Seek a Miracle) Ataxia Group
Ireland: Ataxia Ireland
Italy: AISA (Associazione di Lotta alle Sindromi Atassiche), Associazione Ogni Giorno per Emma Onlus (www.per-emma.it)
Morocco: Association Marocaine de l'ataxie de Friedreich
Mexico: Ataxia en México
Netherlands: Ataxia ADCA Nederland
Pakistan: CoFA (Community of Friedreich's Ataxia of Pakistan)
Poland: Fundacja Samarytanin, Forum Ataksja
Portugal: APAHE (Associaçao Portuguesa de Ataxias)
South Africa: Ataxia South Africa
Serbia: Friedreich's Ataxia Association
Spain: Ataxias en Movimiento, FEDAES (Federación de Asociaciones de Ataxia de España)
Sweden: Svenska Ataxiföreningen
Switzerland: AChAF (Association Suisse de l'Ataxie de Friedreich, Schweizerische Freidreich'sche Ataxie Gesellschaft)
Turkey: Friedreichs Ataksisi Forumu
United Kingdom: Ataxia UK
United States: FARA (Friedreich's Ataxia Research Alliance), FA Project (http://www.thefaproject.org), NAF (National Ataxia Foundation), FAPG (Friedreich's Ataxia Parents Group)
Uruguay: Ataxia en Uruguay
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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.