You quite rightly preface all your remarks by stating that you are not a doctor; but then you proceed in an attempt to convince people that they should experiment with two substances, the safety of which is not proven in the quantities in which they need to be taken.
The safety of our Friends and forum users is our priority, which we have to put first. We would be remiss in our duties if we did not highlight the dangers in consuming substances which are not yet approved as safe. Ataxia UK, as the patient group for people affected by ataxia, cannot allow this site to be used to advise or persuade people (explicitly or implicitly,) that they should take substances which may be dangerous. It is not sufficient to suggest that because they are freely available on the High Street or Amazon, they are automatically safe. They are only safe if they are taken at the recommended dose.
We recognise that there is lots of potential for treatments and cures in re-purposing natural substances and drugs that are already available. In April 2014 The Lancet published a paper from Prof Fechtenstein on the small trial he had done (funded by us) into the potential use of nicotinamide (B3) in the treatment of Friedreichs ataxia, which had positive results; we are now seeking funding for the larger trial that is required. Shortly after these results came out, 3 people with FA chose to take nicotinamide in large quantities and ended up in hospital with liver failure. Just because a substance shows promising results and is freely available does not mean that it isn’t dangerous.
Ataxia UK is not in receipt of funding from Bioblast (or any other pharmaceutical). In order to bring treatments and cures to market and make them accessible to all, we recognise that it will be necessary to work in partnership and collaboration with pharmaceuticals. However, we also recognise that the agendas and priorities of patients and pharmaceuticals are often VERY different. Ataxia UK has not, and will not, do anything to compromise our ability to speak with an independent voice on behalf of people affected by ataxia (who also form the leadership of the charity by being its Trustees).
I find the tone, and some of the content, of your responses to my previous post on this topic very offensive. You know nothing about me, or the committed work of Ataxia UK and its members over the last 50 years. You did not leave the ‘Living with Ataxia’ site voluntarily, you were banned by them for conducting yourself in a similar fashion to the way that you have here. Ataxia UK has never before restricted anyone's use of this site, I very much hope you will be the first and last.