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----- Original Message -----
From: Paul Konanz
Sent: Friday, November 21, 2008 3:18 PM
Subject: [FAPG] Discussions/Deferiprone
Just in case some of the group did not find Claudie Baleydier's good input on Deferiprone at the bottom of the Email, ...
23 de noviembre de 2008 12:48
Deferiprone messages from AFAF November 2008
Translation by Marion Clark
From: C. Baleydier
To: FA_babelFAmily, FAPG
Sent: Saturday, Nov. 22, 2008
Subject: FW: [afaf] deferiprone sorry it’s in French
From: Ludivine Arriberouge
Date: Tuesday, 11/11/08
Subject: Re:[afaf] deferiprone
I also participated in the deferiprone trial two years ago. I had a reduced white cell count, like Marine Cartier. It was Prof. Munich [sic] who called me personally to tell me to stop the treatment. Following this unsuccessful trial I didn’t see any change, either for better or for worse. On the other hand, I know that this drug has helped many other ataxians: speech, fine motor skills, walking.
In my case and especially in Marine’s case, it was the whole team that messed up and not just Munich [sic]. Now, they’ve corrected their mistakes and adapted the dosages.
In addition, in October, I went to see Professor Munich [sic], and he had me do a blood test. Later that afternoon he called me back because my blood sugar level was at 5. That same evening at the hospital I learned that I had diabetes and that I was lucky to have avoided a coma.
Thanks, Munich [sic]…
Greetings to all, till next time
From: Marine Cartier
Date: Sunday, 11/9/08
Subject: RE: [afaf] deferiprone
Professor Munnich gave me this treatment at too high a dose and I found myself with my white count dropping, to the point that I had 13 in my body. At the time of the clinical trial, I had blood tests done every 15 days, so they saw perfectly well that my white blood cell count was falling from week to week. The error of Prof. Munnich was in not looking at the blood tests that the lab was faxing to him. I was saved at the very last minute, so if anyone is supposed to take this medication, please, be very careful.
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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:
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:
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.