Scroll, browse and zoom on the map to find ataxia associations all around the globe. Click on the markers to find their contact details (website, phone, e-mail, etc). Show or hide the right pane as you wish.

Additionally you may launch the full screen view: Full Screen Map

Associations dedicated mainly to Friedreich's Ataxia

Associations dedicated to all kinds of ataxia

Communities and forums on the Internet

Is your association or community related to ataxia and is missing on our map? Would you like to change or update the contact details displayed for your association? Then please contact us at This email address is being protected from spambots. You need JavaScript enabled to view it.. The BabelFAmily team would also be grateful if you added a link to us as well.

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)

Austria: Fataxie

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

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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