BabelFAmily is  non-profit organization headquartered in Spain (CIF: G-85711513). We are a worldwide group of volunteers that unite our skills to support the greater FA community of patients, doctors, researchers, scientists and associations in their mission to find treatments and a cure for Friedreich’s ataxia.

Friedreich’s ataxia is a hereditary, progressive, neurological disorder characterized by serious disruptions in balance, movement and muscle coordination. FA is typically diagnosed in childhood between the ages of 5 and 15. Symptoms include: fatigue, loss of reflexes, aggressive scoliosis, possible heart condition or diabetes, loss of balance and coordination, slurred speech and vision impairment.

 

Activities promoted by BabelFAmily


• Encouraging and supporting the financing of biomedical research to find treatments and a cure for Friedreich’s ataxia through partnerships and co-funding initiatives;
• Facilitating information exchanges globally and building links between FA patients, doctors, and the scientific community for improved care;
• Serving as a centralized resource to link FA associations internationally;
• Creating ongoing awareness to ensure Friedreich’s ataxia is known and understood worldwide;
• Providing a constant flow of information and news, in multiple languages, to patients and families regarding conferences, meetings, research projects, and clinical trials. 

The BabelFAmily website www.babelfamily.org currently supports 10 languages (English, Spanish, Italian, French, German, Portuguese, Russian, Turkish, Swedish and Arabic). This multilingual approach lets us reach new communities and individuals who did not previously have access to information about Friedreich’s ataxia. 

Growing this community opens to the door to create new networks with a broader reach to support FA-related efforts worldwide. This need to overcome language barriers is why the BabelFAmily project started out as a multilingual mailing list in 2006 and has grown from there into an established non-profit. The project grew from the desire to share information, scientific as well as other types, in a more global way. 

BabelFAmily’s board members and volunteers continue the work of international advocacy with representation from different nationalities to offer a wide range of views, news and contacts. Additional tools like newsletters and social channels further support members of the FA community.  Visit us on:

Facebook     YouTube

BabelFAmily wants you to know that you can now make donations online to support research into Friedreich's ataxia.  Click on the red PLEASE DONATE button found on the home page, near the upper right corner.  You can also donate to BabelFAmily with a bank credit transfer made out to BabelFAmily Association:  IBAN: ES30 2100 2025 71 0200280124  -  SWIFT:  CAIXESBBXXX


Association Statutes (summary)


- BabelFAmily is set up as a non-profit association, under the protection of the Spanish Organic Law 1/2002, from March 22 and complementary rule, with judicial personality and full capacity to work. BabelFAmily is independent of any other association of Friedreich´s Ataxia patients and likewise does not represent any other association.
- BabelFAmily´s scope of action is international, with headquarters at C/ Monte Peñalara, 16 – 28660 Boadilla del Monte - Madrid - Spain.
- Collaboration within BabelFAmily is given on a voluntary basis. The Board of Directors, advisors, translators, and other collaborators do not receive any type of remuneration.


Scientific Advisory Board

The mission of the Scientific Advisory Board consists of facilitating decision-making concerning the financing of the most promising biomedical research projects.

Dr. Salvatore Adinolfi - Dr. Adinolfi´s scientific interests focus on neuro- degenerative genetic disorders associated with trinucleotide expansion in the non-coding regions. In particular he has been working on frataxin, a small mitochondrial protein associated with Friedreich’s ataxia. His team uses a multidisciplinary approach to obtain structural information on frataxin and to characterize its function(s) at the molecular level. Recently the group   proposed a possible role for frataxins as iron sensors that act as regulators of iron-sulfur cluster formation. Dr. Adinolfi's team believes that a better understanding of the structure-function relationship is essential to elucidate the molecular mechanisms of this disease.

Dr. Filip Lim - Present position: Assistant Professor in the Department of Molecular Biology, Universidad Autónoma de Madrid (Spain). Undergraduate training in Biological Sciences and PhD in Biochemistry at the University of Adelaide, Australia followed by postdoctoral training in the European Molecular Biology Laboratory (Heidelberg) and at Harvard University (Children´s Hospital, Boston). His laboratory presently consists of 2 postdocs, 1 technician and 1 Masters student. The team is developing HSV-1 amplicon vectors and using these and other viral vectors to investigate mechanisms of pathology and repair in the nervous system. It currently has three projects active: gene therapy in Friedreich´s ataxia [in close collaboration with the labs of Javier Diaz-Nido (CBMSO, Madrid) and Richard Wade-Martins (Oxford University)]; tau function and role in neurodegeneration [in collaboration with Jesus Avila (CBMSO, Madrid) and Noscira, SA]; human olfactory neural cells for cell therapy and patient-derived cell models.

Dr. Salvador Martínez - Head of Anatomy and Embryology at Miguel Hernández University, Alicante, Spain, and Principal Investigator at the Neurosciences Institute, Alicante. He is working on experimental stem cells and cellular therapy in neurodegenerative diseases such as ALS and FA. Dr. Martínez plans to apply bone marrow  stem cells in spinal ganglia of  Friedreich´s ataxia patients. The bone marrow stem cells give off a substance called GDNF (glial-cell derived neurotrophic factor) which acts like a drug on the neural cells, preventing their apoptosis (cellular death).  His project could lead to a first-in-class therapy that significantly alters the course of this life-shortening disease. Dr. Martínez has already carried out a phase I clinical trial using autologous bone marrow stem cells  on eleven  ALS patients, achieving  very promising results  without adverse side effects.

Dr. Filippo Fortuna - Doctorate in Medicine and Surgery from the University of Bologna in Italy.  His doctoral thesis, entitled “Clinical Characterization of Optical Neuropathy in Friedreich’s Ataxia, and Identification of Possible Genetic Modifiers”, earned a score of 110/110 cum laude.  He was awarded cum laude the title of Specialist in Clinical Pathology from the University of Bologna for his thesis entitled “Magnetic Resonance Markers of Neurodegeneration in Friedreich’s Ataxia, and Their Application in a Pilot Study with Tocotrienol”.  Dr. Fortuna has participated in numerous medical courses and conferences.  He has authored or co-authored a variety of scientific papers published internationally.  He himself has Friedreich’s ataxia.

Dr. Pierre Rustin is the Research Director at the CNRS, France’s National Center for Scientific Research.  Dr. Rustin specializes in mitochondrial diseases (among them Friedreich’s ataxia), which are diseases resulting from deficient energy production by the mitochondria in the cells.  He directs a team at Robert Debre Hospital (Paris), drawn from the National Institute of Health and Medical Research (or Inserm), and entirely focused on research toward treatments for mitochondrial diseases.  Among his current projects is one which, as part of an international network co-directed with Professor H.T. Jacobs of Finland, is looking at using plant genes to counteract the mitochondrial deficiencies in the cells of humans, flies, and mice.  Another area of research, overseen by Paule Benit, is seeking therapeutic solutions using Harlequin mice, which have a cerebellar ataxia of natural causes.  Finally, relating to Friedreich’s ataxia, Dr. Rustin’s research is focused on the dysfunction of the antioxidant defenses controlled by the Nrf2 factor.  The team’s work also includes a practical aspect with the trial of Pioglitazone in Friedreich’s ataxia, piloted by Dr. Isabelle Husson.

 

BabelFAmily Team            

 

Board of Directors

Dña.Mari Luz González Casas (presidenta)

Dña. Eva Plaza González (vicepresidenta)

D.Diego Plaza González (tesorero)

D. Christian Georg Peter (secretario)

D. Gian Piero Sommaruga (vocal)

Dña. María Belén Blasco Gamarra (vocal)

D. Sergio García Onrubia (vocal)

 

Translators and collaborators

Gian Piero Sommaruga, Stefania Grasso, Martina Piccoli, Olivia Oddenino, Elisa Ponassi (Italy), MariLuz González Casas, Diego Plaza, Paloma Gómez, Marta Alvarez, Javier Ductor (Spain), François Saez, Henriette Champsaur, Christelle Stalport  (France), Manuela Andrade, Mario Galinha, Ana Pereira, Fatima D´Oliveira, Catarina Margarido (Portugal), Hasan Çicek, Selçuk Kiliç, Emrecan Özeler (Turkey), Marion Clark (United States), Pamela Rasey (Canada), Christian Georg Peter, Ayse Aktas (Germany), Nathalie Kourimsky (Austria), Tatyana Tatyanina (Russia),  Claudia Parada (Mexico), Islam Al Kutaifany (Syria), Alshimaa M. Helmy (Egypt), Danilo Define (Brazil), Rosalba Ciancia (Venezuela), Claudia Guiraldes, Marina Popova (UK), Marisa Condurso de Nohara (Argentina).
Webmasters: Diego Plaza and Paloma Gómez (Spain)


The following is a brief introduction to some of BabelFAmily's collaborators:

 

 

Marion Clark 

I'm married and the mother of two teenaged daughters, one with FA. We live in the southeastern United States in a small town where I teach.

 

 

 

 

Pamela Rasey  

I am a business consultant living in Cincinnati, Ohio.  My twin sister’s oldest son was diagnosed with FA in October 2004.

 

 

 

 

 Kresimir Babic 

I am a 43-year-old mechanical engineer from Zagreb, Croatia.
 I have 2 boys diagnosed with Friedreich's Ataxia.

 

 

 

 

 

  Gian Piero Sommaruga

  52 years old, single, living in Milan, Italy. I've been fighting against Friedreich's Ataxia since 2004, when the son of my best friend was diagnosed with this disease. I founded BabelFAmily, initially as a mailing list, in 2006.

 

 

 

 

 

  Mari Luz González

  A married teacher and living in Madrid, Spain. My daughter has FA.

 

 

 

 

 

  Diego Plaza

  I was born in 1984 and I live in Madrid, Spain. I'm a telecommunications engineer. My sister has FA.

 

 

 

 

María Blasco

  I'm a writer and I live in Pamplona, Spain. I have FA.

 

 

 Marisa Condurso de Nohara

I was born in Buenos Aires, Argentina, where I live with my husband and children. I am a freelance translator and translate voluntarily for BabelFAmily since 2010.

 

 

 

 

 

 Claudia Guiraldes  

 

  I was born in Chile but have lived in the UK for over 20 years. I worked as a scientist for 25+ and now amongst other things I am a free-lance translator.

 

 

 

 

 François Saez

 I'm 42 years old, and work as a financial controller. I live near Paris and was diagnosed FA 20 years ago.

 

 

 

 

 

 

  Henriette Champsaur

  I'm married, and my 38-year-old daughter has FA. I live in the Hautes Alpes region in France.

 

 

 

 

 

  Stefania Grasso

  I'm a microbiologist, teacher, and photography amateur from Italy. A friend of mine has FA.

 

 

 

 

 

  Hasan Çiçek

  35 years old. I'm married and have two kids. My sister has Friedreich's ataxia. I have a degree on Biotechnology from the Hacettepe University (Turkey) and a Ph.D from the TU-Braunschweig (Germany).

 

 

 

 

  Paloma Gómez 

  I work as a technical consultant and I live in Madrid. I collaborate in the administration and design of the BabelFAmily website.

 

 

 

 

 

  Christian Georg Peter

  I am 46 years old, German, and live in Madrid where I work in the  IT industry. It is a pleasure for me to be part of the BabelFAmily and to collaborate with all of you.

 

 

 

  

  

  Claudia Parada

  33 years old, unmarried. I studied Biochemistry Engineering. I have FA and live in Mexico.

 

 

 

 

  

  Manuela Andrade

  I'm 34 years old and have FA. I live in Porto (Portugal) and work in a medical clinic.

 

 

 

 

 

 Fátima D´Oliveira

 I'm 39 years old and I have FA.  I live in Vale de Santarém, in central Portugal.

 

 

 

 

 

 

  Selçuk Kiliç 

  29 years old, I have FA. I'm an electronics engineer from Izmir, Turkey.

 

 

 

 

 

 Islam Al Kutaifany 

 I have two names. It may seem strange but some people call me  Slam  and some Lolia. My friends  in BabelFAmily know me as Lolia. I’m 22, I have Friedreich’s ataxia and I’m from Syria. I collaborate with this team translating from English into Arabic. I’m interested in ataxia news  and every news giving me hope. I hope to walk again.

 

 

 

 

  Tatyana Tatyanina

 I'm 44 y.o. I live near Moscow, Russia. I have FA. I'm married. I have a son who is  FA carrier. I'm orthodontist and working at home on the computer. I also collaborate with the BabelFAmily team as a translator. 

 

 

 

 

 

 Alshimaa M. Helmy

I'm 20 years old, single, living in Cairo, Egypt. I'm a university student in the faculty of Biotechnology with an interest in genetically inherited diseases. I had such a great opportunity to get to collaborate with BabelFAmily as a translator from English to Arabic!

 

 

  

 

 

 

 

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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