- Trial participation has huge value, to participants and potentially to everyone!
- Perspective: the outsized importance of very little things
- Five things I learned at the FARA Scientific Symposium, Melbourne, 25th October 2018
- A Virtuous Cycle
- Life with Frederick Ataxia
- D’you like big “…but…”s? Well this one’s huge!
Category Archives: Terry (FAer)
People sometimes think that because they’re invited to participate in a research trial, participation is free. In the sense that free means without cost, it’s not. Trials are enormously complex, time consuming, and expensive. Participants might not be required to … Continue reading
It’s important for all FAers to join the registry Things aren’t as simple as we hoped We are all individuals Bigger isn’t always better (but its a good way to start) If you don’t use it, you’ll lose it. I’m … Continue reading
If you need something done, ask a busy person they say. And they’re right. You see, what keeps busy people busy is that they’re getting things done. Add the thing you need done and it joins their list. They’ll get … Continue reading
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 … Continue reading
According to Deloitte, smartphone penetration in Australia is at almost the highest level in the world, at 88% in 2017. They’re so useful I reckon penetration among FAers should be 100%. Here are just three apps I have on my … Continue reading
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 … Continue reading
I’m not a scientist, nor a medical researcher. I’m just a normal FAer. I was invited to the Symposium as part of a Patients Panel, a Q&A session for researchers who might work in a lab and might interact only … Continue reading
There’s a character in The Hitch Hiker’s Guide to the Galaxy by Douglas Adams called Rob McKenna. Rob is surly, grumpy and intolerant because it’s raining. In fact, wherever Rob is, it’s always raining. As Douglas Adams explains: “… for, … Continue reading
In the Spielberg film Bridge of Spies, Rudolf Abel is arrested, charged, tried and convicted of being a Russian spy. He’s “the most unpopular man in America”. At their first meeting, his attorney (Frank Donovan/Tom Hanks) commented on his calm … Continue reading