@christina-logan
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Christina Cordaro started the topic FARA Symposium and Energy Ball – Events this Weekend in the forum Additional Resources 1 day, 5 hours ago
The USF Health Ataxia Research Center along with the Friedreich’s Ataxia Research Alliance (FARA) are pleased to offer for a special hybrid symposium focused on advancing therapeutic approaches. The symposium is rhis Friday, September 24th 6:30pm-8:30pm (ET).
To view the agenda, RSVP for the in-person symposium, or to connect to the live stream,…[Read more]
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Christina Cordaro posted a new activity comment 2 days, 23 hours ago
Hi Katherine,
Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part…[Read more] -
Christina Cordaro posted a new activity comment 2 days, 23 hours ago
Hi Ray,
Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of our c…[Read more] -
Christina Cordaro started the topic Track FA Webinar- Tonight! in the forum Additional Resources 2 days, 23 hours ago
FARA (Friedreich’s Ataxia Research Alliance) and Nellie Georgio-Karistianis from Monash University in Australia are hosting a webinar for the TRACK-FA Study thia evening at 7 pm EST.
The TRACK-FA Study is designed to be an extensive international multi-centre neuroimaging study in FA to include 200 children and adults. The study will have…[Read more]
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Christina Cordaro replied to the topic New Book in the forum Parents & Caregivers of Those with FA 6 days, 22 hours ago
I’ve read Shifting Into High Gear by Kyle Bryant!
There’s also Stare At Me by FA Patient, Joey Mullaney that just came out!
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Christina Cordaro posted a new activity comment 6 days, 22 hours ago
Hi Elise,
Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of our c…[Read more] -
Christina Cordaro started the topic Resource Guide in the forum Additional Resources 1 week, 1 day ago
When you or your family member were new diagnosed, did you want readily available resources and tools? Hearing the words “no cure or treatment” can be scary and a lot to take in.
That’s where Liam Dougherty (FA) patient), and Katelyn Leader, whose sister has an undiagnosed form of spinocerebellar ataxia come into play.
They collaborated by…[Read more]
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Christina Cordaro started the topic Motivational Monday – Adaptive Clothing is the Future in the forum Living with FA 1 week, 3 days ago
Click the article below for an inspiring story on how more fashion industry leaders are not only building a fashion brand, shopping adaptive-fashion brands, or even changing the industry- their main focus is to make fashion truly accessible to everyone.
https://www.yahoo.com/lifestyle/adaptive-clothing-future-3-leaders-040000944.html?guccounter=1
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Christina Cordaro posted a new activity comment 1 week, 3 days ago
Hi Phoebe,
Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of ou…[Read more] -
Christina Cordaro posted a new activity comment 1 week, 3 days ago
Hi Jude,
Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of our c…[Read more] -
Christina Cordaro posted a new activity comment 1 week, 3 days ago
Hi Marie,
Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of our c…[Read more] -
Christina Cordaro started the topic Slurred Speech in the forum Assistive Device Usage 2 weeks, 1 day ago
Slurred speech can be a common symptom of FA. For the FA patient, we can experience difficulty getting words out and getting the words out clearly when speaking. It can also become tiring when having to repeat your train of thought.
Do you or anyone you know use dictation software? Google is a great tool with emails, documents, etc. There…[Read more]
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Christina Cordaro started the topic Motivational Monday – Goals in the forum Living with FA 2 weeks, 2 days ago
It’s a new Monday:
New Week
New Goals
New AttitudeWhat are you looking to accomplish this week?
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Christina Cordaro posted a new activity comment 2 weeks, 2 days ago
Hi Lyne,
Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of our c…[Read more] -
Christina Cordaro replied to the topic New Season – Fall in the forum Living with FA 2 weeks, 2 days ago
Lucky you, @suzannelowe390yahoo-com! As I read this, it is 90 degrees and high humidity where I am!
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Christina Cordaro posted a new activity comment 3 weeks, 1 day ago
Hi Darla,
Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of our c…[Read more] -
Christina Cordaro posted a new activity comment 3 weeks, 1 day ago
Hi Suzi,
Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of our c…[Read more] -
Christina Cordaro started the topic New Season – Fall in the forum Living with FA 3 weeks, 1 day ago
With September 1st here, is anyone else ready for this summer season to be over?
For me, the heat worsens my FA symptoms. I become more tired and feel “uncomfortable in my own skin” with the humidity.
Who else is excited for cooler temperatures?
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Christina Cordaro replied to the topic Is Asking for Help Hard? in the forum Parents & Caregivers of Those with FA 3 weeks, 1 day ago
I used to be so stubborn when it came to asking for help. I always tried to do everything on my own. But then I came to the realization that my pride was getting the best of me- things were becoming too difficult to do independently, I would become tired easily or end up getting hurt. Now, I am OK with askjng for help because I know my health and…[Read more]
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Christina Cordaro started the topic Motivational Monday – Courage in the forum Living with FA 3 weeks, 3 days ago
“May you have the willingness to adapt, the strength to persevere, the faith to believe, and the courage to live.”
What does courage mean to you? To me, courage is getting out of bed each morning and working an eight hour work day, even if I am facing the FA symptom of fatigue!
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