http://health.groups.yahoo.com/group/FA_babelFAmily/message/1979  (ITA)

http://health.groups.yahoo.com/group/FA_babelFAmily/message/1980  (ESP)

 

http://health.groups.yahoo.com/group/FA_babelFAmily/message/1982  (FRA)

 

 

Translation:  Marion Clark

 

 

 

From:  Gian Piero Sommaruga (home)

To:  babelFAmily-Italia; FA_babelFAmily

Sent:  Wednesday, July 2, 2008 10:37 PM

Subject: [FA_babelFAmily] ITA:  Letter from Daniela

 

Dear Friends,

 

What follows is a letter that Daniela (*) wrote to me a little while ago to bring both me and all of you up to date on how things are going for her.

I’m sending it to you at her request.

 

Gian Piero

 

(*) For more about Daniela see the following links:

 

http://health.groups.yahoo.com/group/FA_babelFAmily/message/1536 (FRA)

http://health.groups.yahoo.com/group/FA_babelFAmily/message/1535 (ESP)

http://health.groups.yahoo.com/group/FA_babelFAmily/message/1525 (SVE)

http://health.groups.yahoo.com/group/FA_babelFAmily/message/1515 (FRA)

http://health.groups.yahoo.com/group/FA_babelFAmily/message/1512 (POR)

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

http://health.groups.yahoo.com/group/FA_babelFAmily/message/1507 (ESP)

http://health.groups.yahoo.com/group/FA_babelFAmily/message/1506 (ITA)

 

 

From:  Daniela

To:  gippi

Sent:  Wednesday, July 2, 2008 9:26 PM

Subject:  Re:Fw:Translation—[afaf] The young Italian woman who was taking deferiprone and who was doing a special type of physical therapy

 

 

Dear Giampi,

 

I apologize for not having written you as I’d promised to, but there’s so little time.  I’m using almost all my time for therapy, even if there are people who tell me that I’m going too far and that I should also think about just enjoying myself.  I’m just going on as I have been--we’ve seen results already, and I hope to see even more.  

Sometimes to be so stubborn in doing things is useful, in the sense that these days I’m going out more with more assurance, I have a social life--and we’re not talking about a society that is all roses and flowers;  we all know how it is, especially those of us who are disabled.  

Also, because my life is mine and only mine, not ataxia’s, therefore, I’m creating the future for myself, or at least I’m trying.  I’ll be starting up again in September with the Lokomat--they had already called me for an admission in July but I couldn’t go then, so I’ve changed all my plans.

I hope in September to have other improvements, given that I am maintaining those already seen.

 

A big kiss,

 

Daniela

 

°°°°°

 

 

 

 

From:  afaf on the part of Gian Piero Sommaruga (home)

Sent:  Monday, June 30, 2008

To:  afaf

Subject:  Re:[afaf] The young Italian woman who was taking deferiprone and who was doing a special type of physical therapy

 

Joelle,

 

I’ll get more information directly from Daniela and her mother and I’ll be able to tell you.

 

 

 

°°°°°

 

From:  Joelle Chabert

To:  afaf

Sent:  Monday, June 30, 2008

Subject:  RE:[afaf] The young Italian woman who was taking deferiprone and who was doing a special type of physical therapy

 

 

Thanks for encouraging us.  Is she still making progress?

 

Joelle Chabert

 

 

 

°°°°°

 

 

From: afaf on the part of Gian Piero Sommaruga (home)

Sent Monday, June 30, 2008 20:48:39 +0200

To: afaf

Subject:  Re:[afaf] The young Italian woman who was taking deferiprone and who was doing a special type of physical therapy

 

Joelle,

 

Daniela is doing very well.  In September she’s going to return to doing Lokomat therapy for a month at the Galeazzi Institute in Milan.  She’s still doing a lot of physical therapy, even privately (paying) at home.  She’s still taking deferiprone thanks to the compassionate use protocol in Turin.  I spoke with her mother on the phone a few days ago - Daniela was at work - and she was very happy.  I’ll keep you informed.

 

Gian Piero

 

 

 

°°°°°

 

 

From:  Joelle Chabert

To:  afaf

Sent: Monday, June 30, 2008 12:38 AM

Subject: [afaf] The young Italian woman who was taking deferiprone and who was doing a special type of physical therapy

 

Does anyone have news of that young Italian woman Daniela who was doing a special type of physical therapy, the Lokomat, and who was taking deferiprone?  Do you know if the deferiprone trial has ended or at least made progress?

 

Talk to you soon,

 

Good night,

 

Joelle

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.

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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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