Original Message -----

From: Jennifer Callaghan

To: FARAA mailinglist

Sent: Tuesday, November 25, 2008 3:25 AM

Subject: [fara] Australian FA drug trial announcement

 

Monday, 24th November 2008

FIRST EVER DRUG TRIAL FOR FRIEDREICH ATAXIA IN AUSTRALIA

FARA(A) is very excited to announce the approval of the very first clinical drug trial in Friedriech Ataxia in Australia.

A Deferiprone Phase II double blind trial will commence shortly under Associate Professor Martin Delatycki in Melbourne. Participants will be aged 7 to 17 years old, Australia wide. This is a very significant step for FA patients and their families, many of whom have been waiting many years for this important breakthrough.

The Australian site is part of an international,multi-centre, double-blind, randomized, placebo-controlled six month clinical trial. Other participating sites include Belgium, France, Italy, Spain and London, UK.

On behalf of FARA(A) and all FA families, we strongly encourage the Australian FA community to support our involvement in this international trial. The results of the trial will be crucial in moving us towards an effective treatment and cure for FA.

Should you or your family member be interested in participating in this trial, or if you would like further information, please contact Varlli Beetham our Executive Director on 03 8615 4808 or This email address is being protected from spambots. You need JavaScript enabled to view it.. as soon as possible

Yours sincerely,

Emeritus Professor Peter Rousch AM

President

Friedreich Ataxia Research Association (Australasia)

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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