Appreciating my own value part II
Friedreich Ataxia Network | Queensland's FA support network
by Terence O'Hanlon
11M ago
Tomorrow it’ll be May which means it’s the time to raise funds for FA research via the Lend Us Some Muscle campaign (more information here). It’s not hard to get involved. Simply decide how you’ll be active and when during the month, that part’s easy. What many people find much more challenging is turning their activity into funds. The first steps are straightforward – your fundraising page can post your photo and a link to Twitter, to Facebook, even to LinkedIn. It’s much more effective but more difficult though, to include a link to your page and compose an email to all your contacts asking ..read more
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Progression involves change, not loss.
Friedreich Ataxia Network | Queensland's FA support network
by Terence O'Hanlon
1y ago
Sometimes English isn’t as precise as it should be. The French for missing someone is “Tu me manques”, which would more accurately be expressed in English as “I feel an absence of you”. It’s six months since I gave up driving and while it has certainly impacted when and where I can choose to go, impacts which I feel acutely from time to time; while I loved driving and I loved being able to drive, I can’t honestly say I miss driving. I’m no neuroscientist but to me one of the things that FA progression does is to diminish the effectiveness of my autonomic nervous system. The autonomic nervous s ..read more
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FA Patient Update 2022
Friedreich Ataxia Network | Queensland's FA support network
by Terence O'Hanlon
2y ago
Hi all, A few were fortunate enough to travel to Melbourne at the end of February to attend the first in-person FA Patient Update in what seems like forever! The one in early 2020 was cancelled at short notice and brought home to many of us that the COVID crisis was deadly serious. Many more of us were able to join via a videolink. But in case you didn’t, the whole thing was recorded and you can view it anytime via this link (password: yB!fCJ2p). I recommend watching the presentations, and there’s even a “speed” option (bottom right corner) which lets you play at up to 2x actual speed; but I r ..read more
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FA and balance… it’s complicated
Friedreich Ataxia Network | Queensland's FA support network
by Terence O'Hanlon
2y ago
Balance deficit is often one of the first signals that something’s awry and leads to doctor’s visits, referral to a neurologist and eventually diagnosis for someone with FA. We’re told that balance is so important that through evolution, humans have developed three separate systems that help with it. Each of these, separately, deteriorates in FA. The first is proprioception, the ability for the mind to imagine where a limb is, in space. It’s what enables humans to walk without looking at their feet, to put their feet on the correct pedal when driving etc. Proprioception is so important that wh ..read more
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Sometimes it’s okay to be a “Karen” part 1
Friedreich Ataxia Network | Queensland's FA support network
by Karen Townsend
3y ago
Hello everyone, for those of you that don’t know me, my name is Karen Townsend and I was diagnosed with LAOFA at the age of 32. Those of you that know me also know that I hate when the media or society stereotypes people that challenge everything regardless if it’s justified or not, and refer to them as “Karen’s”. I try to live my life as unconfrontational as possible, but I’m here to tell you that sometimes it’s okay to stand up for your rights, especially when the NDIS is concerned. I will be doing a series of blogs where I focus on particular subjects that have happened to me that might jus ..read more
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Introduction to NDIS
Friedreich Ataxia Network | Queensland's FA support network
by Karen Townsend
3y ago
Hello everyone, hope you are All doing well. I’m blogging about some of my experiences with the NDIS/NDIA in the hopes it can be a guideline and useful to even just one person. Everyone has a different experience, in no way am I telling anyone this is the way everyone should go about this, it’s just to offer assistance in your journey. First I will introduce myself to anyone that doesn’t know me personally. My name is Karen Townsend, and I am originally from Brooklyn New York, although I have also lived in New York City, New Jersey, Pennsylvania and Florida. I moved to Australia almost 13 year ..read more
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Fara Patient Information Forum 2020, note 3 of 3
Friedreich Ataxia Network | Queensland's FA support network
by Terence O'Hanlon
3y ago
This is my third and final note documenting what was presented at fara‘s Patient Information Forum in November 2020. It was an information-packed event and I’m delighted I saw it live. Remember, even if you didn’t though, the presentations were all recorded and you can still view them. I’m neither a researcher nor a scientist. This note tells what I, a simple FAer, understood from the presentations. So, as I said before, I still recommend very strongly that you make time to see and hear the full presentations from the researchers themselves. To view them, click here and when it asks for a pass ..read more
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Fara Patient Information Forum, Nov 2020, note 2 of 3
Friedreich Ataxia Network | Queensland's FA support network
by Terence O'Hanlon
3y ago
This is the second of three notes I’ll write documenting what was presented at fara‘s Patient Information Forum in November 2020. It was an information-packed event and I’m delighted I saw it live. Even if you didn’t though, the presentations were all recorded and you can still view them. I’m not a researcher or a scientist. This note tells what I, a simple FAer, understood from the presentations. So, as I said before, I still recommend very strongly that you make time to see and hear the full presentations from the researchers themselves. To view them, click here and when it asks for a passco ..read more
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Fara Patient Information Forum, Nov 2020, note 1 of 3
Friedreich Ataxia Network | Queensland's FA support network
by Terence O'Hanlon
3y ago
In previous years, I’ve picked out just a few highlights I’d learned at these info forums but that was mostly because I couldn’t make detailed notes while paying attention. This latest info forum was recorded so I’ve been able to watch it over again, and don’t have that excuse. This is the first of three notes to cover all the presentations. They’re still intended to be explanations, translations into normal FAer language, but this time I plan to try to cover what was covered in all the presentations, and even in some cases, expand on something referred to only in passing. So they’ll be more c ..read more
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Trial participation has huge value, to participants and potentially to everyone!
Friedreich Ataxia Network | Queensland's FA support network
by Terence O'Hanlon
4y ago
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 pay anything, but someone is paying. In addition, for participants, there are costs other than money. Participation requires commitment to responsibilities that if they aren’t delivered on, could damage or even invalidate the trial. The most important of these is discretion. It’s rare that participation would need to actively be ke ..read more
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