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Christina Cordaro started the topic Voice Control in the forum Living with FA 1 day, 16 hours ago
Does anyone else have difficulty controlling your voice volume? I find myself having this issue alot lately. J tend to talk over people or interrupt them when they are talking when I don’t mean to.
Do you know of any tips to prevent this?
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Christina Cordaro started the topic FDA Approval Letter – Omaveloxolone in the forum FA Research, Scientific News, & Clinical Trials 4 days, 17 hours ago
The deadline to sign this letter was this past Wednesday, January 20th. Over the past two weeks, people living with FA, their family members, their friends, their healthcare providers, and their advocacy organizations came together and produced 73,000+ signatures!
In the next few weeks, the FARA (Friedreich’s Ataxia Research Alliance) team will…[Read more]
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Christina Cordaro started the topic Hearing Loss in the forum Living with FA 5 days, 16 hours ago
Is anyone here affected by hearing loss due to living with Friedreich’s Ataxia?Do any of you wear hearing aids and if so, what kind do you have? Do they help positively or negatively?
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Christina Cordaro started the topic Anxiety and FA in the forum Living with FA 1 week ago
With FA, it’s hard to tell if it will be a good day or bad day. When I am having a bad day relating to FA, I tend to have random emotional outbursts that leads me into having a breaking down. This usually happens when I am overworked or fatigued.
Does this happen to anyone else and how do you cope with it?
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Christina Cordaro started the topic MLK Day in the forum Living with FA 1 week, 1 day ago
This is my favorite Martin Luther King quote that reminds me of what it is like to live with FA. Each day I like to celebrate my small victories and what I accomplish.
What’s you favorite MLK quote and why?
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Christina Cordaro posted a new activity comment 1 week, 1 day ago
Hi Marian,
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 started the topic Walking Stick vs. Cane in the forum Assistive Device Usage 1 week, 5 days ago
Who here on the forums has used or uses walking stick? I hear it has more stability than a camera and it truly helps with balance when walking since it is as tall as you.
Does anyone have any good recommendations for brands or styles?
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Christina Cordaro replied to the topic Describing FA to others in the forum Relationships & FA 1 week, 6 days ago
I say it’s a neurological disorder that affects balance, loss of coordination and speech. Also, I have started to use a walker to help keep me safe.
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Christina Cordaro started the topic FDA Approval Letter – Deadline is January 20th in the forum FA Research, Scientific News, & Clinical Trials 1 week, 6 days ago
Thank you to everyone who signed, wrote a statement, and shared this effort. There has been 38,000 signatures and we are in our last week (deadline is January 20th)!
Click here to read and sign the letter: http://www.curefa.org/advocacy
*This letter requests Reata to submit a New Drug Application (NDA) on an urgent basis and FDA to exercise the…[Read more]
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Christina Cordaro started the topic Auditory Processing in the forum Living with FA 2 weeks ago
Lately, I have been noticing my hearing is becoming more affected due to FA. I am having trouble listen accurately, keeping my focus, and difficult with speech (whether it is getting my own words out or understanding other people’s words). It is extremely frustrating because I try my best to pay attention and use my energy to do so.
Does anyone…[Read more]
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Christina Cordaro started the topic Wheelchair Preference in the forum Assistive Device Usage 2 weeks, 1 day ago
For wheelchair users, do you prefer to use a manual wheelchair or an electric wheelchair? Do you use one over the other for certain benefits?
For me, I divide my time eith using a walker and wheelchair because of my fatigue. I prefer a manual wheelchair because I don’t use it regularly so it’s easier for someone to push me and because I can’t…[Read more]
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Christina Cordaro started the topic Ankles in the forum Living with FA 2 weeks, 4 days ago
When it’s winter season, my feet always turn purple due to being numb and having no circulation running through them. I recently started to notice the same thing about my ankles. They get swollen too.
Does anyone else experience this and what remedies do you take to prevent this?
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Christina Cordaro started the topic CBD Gummies in the forum Nutrition, Supplements, and Exercise 2 weeks, 5 days ago
I recently started taking these CBD Gummies to help me sleep better and consistently throughout the night. They consist of CBD, CBN and valerian root (all benefits to help this process). I definitely see a difference in taking these vs. taking regular CBD gummies.
Do you take CBD gummies or have other remedies to help you sleep throughout the night?
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Christina Cordaro replied to the topic Reminder – Reata Pharmaceuticals Webinar Tomorrow in the forum Additional Resources 2 weeks, 6 days ago
Hi @becky1977,
The webinar already took place, but you can rewatch it here!
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Christina Cordaro started the topic Sign This Letter! in the forum Additional Resources 2 weeks, 6 days ago
This letter provided by FARA (Friedreich’s Ataxia Research Alliance) is addressed to FDA & Reata Pharmaceuticals to allow individuals with Friedreich’s Ataxia access to Omaveloxolone, a new clinically proven drug that slows down the progression of FA.
This letter requests Reata to submit a New Drug Application (NDA) on an urgent basis and FDA to…[Read more]
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Christina Cordaro posted a new activity comment 3 weeks, 1 day ago
Hi Bridget!
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 started the topic Reminder – Reata Pharmaceuticals Webinar Tomorrow in the forum Additional Resources 3 weeks, 1 day ago
This is the FA Community’s call to action to request access to Reata and the FDA!
Tomorrow, January 5, 2021 at 7pm (EST), a webinar outlining FARA’s proposed response from the FA community to the positive results of Reata Pharmaceuticals’ MOXIe Part 2 clinical study.
Click below to learn more and reg…[Read more]
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Christina Cordaro started the topic Happy New Year! in the forum Living with FA 3 weeks, 1 day ago
How was everyone’s holiday season? Did you do anything exciting that you would like to share?
Did you set any New Years goals for yourself? One of mine is to get more sleep each night because rest is very important when living with FA and it will help me get through my days better.
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Christina Cordaro replied to the topic Happy 2021! in the forum Living with FA 3 weeks, 1 day ago
@frankie-perazzola Happy New Year! This is one of my goals as well 🙂
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Christina Cordaro posted a new activity comment 1 month ago
Hi Susan,
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] - Load More