Dear Friends,

The audio recordings (in Spanish) of the scientific presentations from Encuentro Ataxias 2008 (Ataxias Encounter 2008), organized by Colectivo Ataxias en Movimiento (Ataxias on the Move Coalition) and held April 29 in Madrid, Spain, are now available for an unlimited time and an unlimited number of downloads at the following links. Videos of these same presentations will soon be available in Spanish, followed in the next week by Spanish summaries and English translations of these summaries.

Greetings,
Gian Piero

 

 

01. Presentación de Caja Navarra - Proyecto Tu eliges tu decides:

http://download.yousendit.com/CA7311CA37F67725

 

02. Bienvenida a cargo del  Dr. D. Augusto Silva, Instituto de Salud Carlos III. Centro de Investigaciones Biológicas CIB-CSIC y Doña Julia Mancebo, Colectivo Ataxias en Movimiento:.

http://download.yousendit.com/A16805961F894CB4

 

03. Dr. Manuel Álvarez Dolado. Centro de investigación Príncipe Felipe de Valencia

Avances en investigación sobre mecanismos regenerativos por fusión celular en ataxias:


http://download.yousendit.com/407B50900E214B32

 

04. Dra. Eulalia Bazán. Equipo de Investigación del Hospital Ramón y Cajal (Madrid)

Presentación del avance del proyecto de investigación sobre el  factor de crecimiento hepático LGF como posible agente terapéutico para distintos tipos de ataxias:

http://download.yousendit.com/E8936AB97340FD6D

 

05. Dr. Javier Díaz Nido. Centro de Biología Molecular Severo Ochoa. Universidad Autónoma de Madrid. 

Terapia Génica en Ataxia de Friedreich. Modelos Celulares de Bulbo Olfatorio y su repercusión en los afectados:


http://download.yousendit.com/19B64078324243AD

 

06. D. Francesc Garsó, director de Brudy Technologies.

Antioxidante Celular basado en el DHA. Posible tratamiento para el deterioro de visión periférica (en algunos casos de pacientes de Ataxia):


http://download.yousendit.com/EA9FE7E16821C40B

 

07.Dr. Salvador Martínez Instituto de Neurociencias de Alicante. Universidad Miguel Hernández.

Proyecto de aplicación de Células Madre en Ganglios Espinales en AF:


http://download.yousendit.com/73B8B9D86A5CDE69

 

08. Dr. Joaquim Ros. Universidad de Lleida. Modificación oxidativa selectiva de proteínas en modelos de levadura de Ataxia de Friedreich:

http://download.yousendit.com/4770340D7694F40B

 

09. Prof. Michael Patterson . Cyberned.

Presentación del Centro de Investigación para Enfermedades Neurodegenerativas:

http://download.yousendit.com/10D34046794E578E

 

10. Final de las ponencias científicas:

http://download.yousendit.com/188616035A5C0BA1

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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