http://www.cubaheadlines.com:80/2008/07/19/12483/cuba_will_show_world_congress_advances_genomic_medicine.html

 

 

Cuba Will Show in World Congress Advances in Genomic Medicine

 

Sat, 2008-07-19 04:48

 

Cuba’s achievements in the field of genomic medicine will be showed during the 3rd International Congress on Hereditary Ataxia that will take place in the eastern province of Holguin from October 1-3 later this year.

 

Specialists from Spain, Germany, Portugal, the United States, Mexico, Guatemala, and other Latin American countries, will participate in the meeting to discuss aspects related to therapies for the treatment of this disease.

Speaking to
ACN, Dr. Luis Velásquez, Director of the Center for the Research and Rehabilitation
from Hereditary Ataxias in Holguin, said that this disease affects 10 to 15% of the world population.

Among the countries with the highest rates are Mexico, India, Italy, Germany, Spain and the United States.

Velasquez said that the
etiology
of ataxias is still unknown but he said that there is a genetic damage or mutation in a group of this kind of disease. This transformation, he noted, produces an abnormal protein that causes the death of a group of structures of the nervous system.

(Adelante.cu)

 

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FA_babelFAmily note:

see also

http://health.groups.yahoo.com/group/FA_babelFAmily/message/1990 (ENG)

http://health.groups.yahoo.com/group/FA_babelFAmily/message/2001 (ESP)

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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