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Original Message -----
From: "Michel Beaudet"
Cc: Undisclosed recipient
Sent: Thursday, November 06, 2008 3:12 AM
Subject: Santhera's Catena/Idebenone/Mnésis/SNT-MC17
For those who don't know me, my name is Michel Beaudet, I'm 46, have FA and live in Quebec, Canada. I also manage Internaf and I AM MAD AS HELL AND I'M NOT GOING TO TAKE THIS ANYMORE.
Ok, I had a few days to calm down but it didn't work. So anyway here it goes.
When my friend Paul Konanz mentioned how outraged he was when some canadian parents told him that Catena would cost between $20-$30K/year for every fa'er, a detail he probably didn't know was left out. $20-$30K/year is for doses of 450mg for kids under 45kg(99lbs). 450mg for a person weighing 45kg(99lbs) is equal to a dose of 10mg/kg, which is a far cry from the ±45mg/kg found in their own clinical trials to be well tolerated, good for the heart(cardiomyopathy) and slight neurological improvements (http://www.curefa.org/docs/pr_2006-11-13_santhera.pdf ).
As for me, and most weighing about 75kg(165lbs) I'd take the max. dose which is 2250mg. For a person weighing 75kg(165lbs) it's equal to a dose of 30mg/kg, which is also a far cry from the ±45mg/kg found in their own clinical trials to be well tolerated, good for the
heart(cardiomyopathy) and slight neurological improvements ( http://www.curefa.org/docs/pr_2006-11-13_santhera.pdf ).
And now ladies and gentlemen, get ready for this and have the phone near you ready to call 9-1-1 in case it causes you to have a
heart-attack, the price they ask for this is over $100K/year or about 9K/month.
And what is this outrageous price for? A cure? A full proof treatment? A treatment that will restore most/some of your lost abilities? No
none of these. For those with cardiomyopathy it's proven it'll help stop the progression and maybe even reverse some damage, For young
fa'ers replace the "it's proven" in the previous sentence for "the trend seem to show". How can Santhera justify such a price? Not the
usual Research and development bit cause Idebenone was developed by Takeda aroun 2 decades ago. Santhera simply signed a marketing agreement with them ( http://tinyurl.com/54rtv3 ).
Paul approached a nutritional supplements company that sold Idebenone on the internet. He negotiated with them and they now offer Idebenone in 500mg caps and with a 20% discount for the fa community. He also had it tested to make sure it was Idebenone and it was. Let's take my case for example: I'll even take a higher dose of 2500mg/day. A 90x500mg bottle is, after the rebate, $56. A bottle would last me 18 days. A year supply would require a little more than 20 bottles, so 21x56 = $1176. And with that price, we all know that the company is making a good profit. How can Santhera justify selling it with a 10000% (yes ten thousand %) increase.
I have medical insurance that will cover 80% of the cost and Santhera has a program to help with the 20% remaining but it depends on your
income. Even if my insurance paid 100%, it's still highway robbery and I won't be part of it. No wonder the worlds economy is crumbling, all
the big companies (Santhera is only small when it compares itself to the bigger pharmaceuticals). All that's important to them is profit,
profit, money, money. What happened to being prous to offer a good product at a reasonable price that you know will benefit your
brothers and sisters, the world over, that are not as fortunate as you.
I spent almost 2 days writing this post, so I better send it before my computer crashes. I urge all of you who can to translate and
crosspost, we all need to organize and do something!!!
Internaf - INTERnational Network of Ataxia Friends
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!
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.