Translation:  Marion Clark



NeuroNE Consortium invites us to their conference in Lisbon



From: Isabel González Jiménez  and  Mari Luz González Casas



The Ataxias en Movimiento (Ataxias on the Move) Collective and FA_babelFAmily  were invited to the 3rd Annual Meeting of the NeuroNE Consortium.  This “network for excellence in neurodegenerative disease research” is made up of 22 of the best groups of academic researchers in Europe along with 5 small companies, which share tools and equipment and collaborate on an integrated multidisciplinary research program (functional and proteomic genomics, physiology, chemistry and clinical studies).  The NeuroNE annual meeting took place in Lisbon, Portugal, from April 16-19, 2008.


NeuroNE had previously requested information on the activities of both the Ataxias en Movimiento Collective and the multilingual mailing list FA_babelFAmily.  This information was published in the NeuroNE program of presentation summaries.  To see this program, use the following link:



Mari Luz González Casas (on left) and Isabel González  Jiménez (on right) with Prof. Stefan Lichtenthaler of the Medical University of Munich


NeuroNE is dedicated to research projects on neurodegenerative diseases such as Alzheimer’s and Parkinson’s, but is also open to rare diseases such amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease) and Huntington’s chorea, which was strongly represented among the presentations at this third annual conference. 

None of the presentations dealt specifically with ataxias, with the exception of the occasional mention.  We held discussions with several researchers with the intention of establishing the necessary foundation for setting up future research concerning ataxias.




Christophe Beclin of the IBDM (Institute for Developmental Biology of Marseilles) and Serena Bielli of TROPHOS, a biopharmaceutical company based in Marseilles, France


Among the outstanding presenters (see program at link above) was Dr. Marc Peschanski of INSERM (French National Institute of Health and Medical Research) in Paris, an authority recognized worldwide for his human embryonic stem cell treatments.  He has obtained good results from stem cell transplants in Parkinson’s and Huntington’s patients.  Hopefully this work with stem cells can also be extended to ataxia patients in the near future.











Mari Luz González Casas:  Dr. Peschanski, could I ask you several questions?


Dr. Peschanski:  Of course.


Mari Luz González Casas:  That was a magnificent presentation.  Your team has also worked on cell lines for myotonic dystrophy type 1 (DMPK) and spinocerebellar ataxia 7 (SCA 7)….Do you also have cell lines from patients with other diseases?  Do you have cell lines from Friedreich’s ataxia patients?


Dr. Peschanski:  No, unfortunately I don’t believe we have those cell lines up to this point.


Mari Luz González Casas:    As persons affected by FA, we are very interested in seeing INSERM also working with FA and other ataxias.  And in this regard we would like to see a collaboration between INSERM and Spanish scientists or those of other nationalities to supply these cell lines.


Dr. Peschanski:  Yes, that would be very useful.  In addition, it would be a pleasure to be able to show you our laboratory and our work, both you and the scientists who would like to collaborate with us.


Mari Luz González Casas:  Thanks very much.  May I publish this interview?


Dr. Peschanski:  Of course.  We’ll stay in touch.




Mari Luz González Casas (on left) and Isabel González Jiménez (on right) with  Professor 

The legacy of Marie Schlau: literature to help cure Friedreich's Ataxia

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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:

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.



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