Do you like big buts? Well this one’s huge!

In the many years since diagnosis, how I describe FA has become pretty standard: with resignation. People would enthuse to me back then about how fast progress was being made in medical research and assure me how convinced they were that there would be a breakthrough in FA that I’d benefit from very soon. As time went on though and my FA progressed, it’s felt appropriate to become stoic. I’m a big supporter of FA research, but I became increasingly convinced that it would benefit FAers much younger than I when a breakthrough was eventually made.

FA is a neurological condition, it’s progressive and degenerative. I do everything I can to slow that progression but even if I’m successful all I do is slow it down, the progression is still happening. However my condition is today, tomorrow it will be a little bit worse. There’s neither treatment nor cure. It’s inexorable and irreversible…

… but that’s not quite true anymore.

Work done at UCLA in America (https://friedreichsataxianews.com/2018/01/02/friedreichs-ataxia-symptoms-largely-reversed-in-new-mouse-model-from-ucla-researchers/) and other work done by Helene Puccio in France (https://friedreichsataxianews.com/2017/09/30/iarc2017gene-therapy-seen-to-reverse-sensory-ataxia-in-friedreich-ataxia-mouse-model/) has shown that FA symptoms can be reversed once researchers find a way to get our cells producing frataxin properly (https://friedreichsataxianews.com/2018/06/05/gene-therapy-fully-reverses-friedreichs-ataxia-changes-mouse-study/).

They’re still quite a way from achieving that but I don’t care. I want them to do their work diligently and get it right. Treatments will benefit me whenever they’re proven, especially the holy grail of DNA editing so cells will produce frataxin efficiently. Supporting fundraisers is all very well but when it’s personal I’m more engaged. I’m impatient again and it’s a good feeling!

Terry O’Hanlon
fara Ambassador

Spiritual Healing

Spiritual Healing

I am at a stage in my acceptance of Friedreich’s Ataxia, where I am not always looking for a cure (although, this would be handy!). Rather, if something pops up in my life, which may better my wellbeing, I jump at it. For example, I have started doing a form of physical therapy called Bobath. It is by no means a cure for FA, but it might just get my body moving more effectively. This may mean a decrease in falls & pain. No, it’s not a cure, but it’s definitely a win.

Finding Hope Amidst a Debilitating Disability

Finding Hope Amidst a Debilitating Disability

The diagnosis

I was a happy, healthy child living on the Gold Coast, Australia when my sister, who is 18 months older than me, started having trouble walking. We would regularly walk the few blocks from our house to the Broadwater and her unsteady gait became more and more obvious. My mum, determined to get to the bottom of it, took her to several doctors. When I was 10 years old the diagnosis was confirmed and my parents were devastated.

A view on meteorology from a physicist

A view on meteorology from a physicist

Neils Bohr, a Danish physicist, is reputed to have said “It’s difficult to make predictions, especially about the future”. He was one of the smartest men to ever have lived. I guess he had an enormous respect for weathermen!

Well for us FAers, predictions are what we seek most in the world. It’s not hard to find out the list of things that’ll go wrong with us. What is hard though is getting an idea of when.