http://health.groups.yahoo.com/group/FA_babelFAmily/message/2044 (ITA)

http://health.groups.yahoo.com/group/FA_babelFAmily/message/2058 (ESP)

http://health.groups.yahoo.com/group/FA_babelFAmily/message/2063 (FRA)

 

Translated by Tom Sathre

 

Note from babelFAmily:  Daniela is an Italian patient with Friedreich’s ataxia, undergoing treatment with Deferiprone (an iron chelator) and Lokomat (specialized physical therapy).  For more information, go to the following link:

http://health.groups.yahoo.com/group/FA_babelFAmily/message/1508 (ENG)

 

Message from Daniela to Gian Piero Sommaruga, distributed with Daniela’s approval

 

From: Daniela

For: “gippi”

Sent on: Wednesday July 23, 2008 9:44 PM

Topic: Greetings

 

Hi Giampi,

 

First of all I would like to say hello, because vacation time is approaching, and before long, I’ll be going off;  besides, I wanted to keep you informed about how it’s going for me.

Up to now I have been able to maintain the improvements I made in the hospital, and I also have better truncal and neck posture, together with better movements and coordination.

In some manual movements and some exercises, such as putting pegs in holes and handling the Rubik’s cube, I have been able to do it faster and more correctly.

My muscle mass has increased a little all over my body.

I have improved my standing posture when I am upright with my weight on both legs, and also my voice is clearer.

See you soon and happy vacation!

 

Dany

 

 

 

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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