This project had its beginnings four years ago in Spain, under the impetus of FEDAES, which organized an initial planning meeting at the La Paz Hospital.  The participants in this meeting chose Dr. Pandolfo to be the project’s scientific coordinator.  They also opened the project to the participation not only of Spanish research groups, but of groups from other countries as well, with the objective of obtaining greater financing by attracting several world-class research groups able to add greater value to the project. 

Subsequently, still through the Carlos III Health Institute and the CDTI [Spanish Centre for the Development of Industrial Technology], FEDAES worked actively to modify and map out the objectives to be financed within the Seventh Framework Programme, and eventually obtained the inclusion of rare neurological diseases, among them the ataxias, which had not originally been included for funding.  Ultimately, it was thanks to the efforts of numerous persons, to the excellence of the project submitted, and to the great support of the various ataxia associations of the European Union, that financing was finally obtained for a project on the ataxias, modifying the bases of the FP7’s voting body in order to get projects on ataxia included.

Among the Spanish researchers participating will be Dr. Francesc Palau as coordinator, along with other Spanish basic research groups, such as that of Dr. Dolores Molto, as well as clinical research groups.

One objective that we hope to attain is the development of a patient registry for the future clinical trials which we hope to conduct as part of the overall project.  We are hopeful that this project will be only the first accepted, and that other studies relating to the dominant ataxias can be presented in response to the next request for projects of the FP7.  For FEDAES, these successes serve to confirm that with the work of the association’s volunteers and the selfless efforts of many others who have collaborated with us, it has been possible to lay the foundation for obtaining this important economic support for doing research into the ataxias, involving numerous excellent European research groups.

The Board of Directors of FEDAES

Source:  communiqué published in the FEDAES Bulletin No. 82 from December 2009

 

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.

 

 

Go to top