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----- Original Message -----
From: Anna Bisogno-Coutts
To: Michel Beaudet ; Internaf's mailing list
Cc: undisclosed recipient
Sent: Sunday, December 07, 2008 3:25 AM
Subject: Re: [fara] mise a jour/update: Santhera et son - Catena/Idebenone/Mnésis/SNT-MC17 - from Santhera
Ron, I hope you read this!
I live in Ontario, you don't have to pay for Idebenone. It is still covered by the IMD program and is imported from Kirkman Labs by a company in Quebec. First, you don't need Catena, continue to take Idebenone, its just a name difference. My Doctors and Pharamacist met with the rep from Catena, when asked why it was suddenly so expensive he didn't respond, no answer, no reason. The drug cost the same to manufacture, they are gauging, they are disgusting. To think that we, FARA, helped fund these studies, helped them get the approval so they could make a fortune.
They should be ashamed of themselves and we as a group should refuse any further funds to them for research. We should be more diligent in protecting our children and adult FA patients.
I say never give these people another dime toward research, chose a different pharmaceutical and make a deal with them, upfront that they promise to keep the drug affordable.
My Pharmacist will no longer be able to provide me with Idebenone, so now, I am going back to Dr. Tarnopolsky who helped keep Idebenone approved by the IMD program, he will let me know the ropes. Once I find out, I will ask him if its o.k. for other Canadian Doctors to contact him to find out the process.
In the meantime I encourage you to buy it online, it's a lot cheaper than Catena. $50.00 cdn for 60 150mg pills.
I will write to as soon as I know.
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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.