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Christina Cordaro replied to the topic Vaccine in the forum Coronavirus (COVID-19) and FA 17 hours, 22 minutes ago
I got my second dose on 4/14 and I only experienced a headache and sore arm that lasted a few days.
For those of you got both doses, how were you able to handle it?
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Frankie Perazzola started the topic Physical activity questions in the forum Nutrition, Supplements, and Exercise 19 hours, 28 minutes ago
By no means am i an expert in the feild of physical activity or fitness but I plan on it one day.
However, I am really good at utilizing credited resources. I can find the answer to most questions with relying on the professionals in the industry as well as finding the appropriate research and studies to answer any questions you may have.
With…[Read more]
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Katherine replied to the topic When people ask if you need help in the forum Living with FA 3 days, 17 hours ago
Ugh, I hate that. I mean, it’s fine when people ask if I need help, but when they ignore and push past my “no thanks,” I find that really threatening. Usually raising my voice and saying “LET GO OF ME” makes them realize what they’re doing and back off.
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Frankie Perazzola started the topic We’ve made changes ! in the forum About Our Forum 3 days, 18 hours ago
Hopefully you’ve noticed some awesome changes to the website. Not only does it look better but it should be a bit easier to navigate 🙌🏼
With that being said, is there any other changes you’d like to see? Is there anything else the team should take note of?
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Christina Cordaro started the topic Canceling Plans in the forum Living with FA 4 days, 23 hours ago
Do you ever find yourself canceling plans or making excuses not to attend something due to FA symptoms? For example, being fatigued or knowing the event will be taking too much energy from you.
Sometimes I feel guilty when this happens, but I remind myself that health comes first.
Does anyone else have the same feeling? What helps you cope with…[Read more]
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Frankie Perazzola started the topic Being an introverted extrovert with a disability in the forum Living with FA 5 days, 22 hours ago
One thing that I have figured out about myself is that I love being social and around people and I also love being in solitude and on my own even more.
In order for me to be an extrovert, or be social, it takes a lot of planning and preparing. Basically, I have to know about a situation well before so I can mentally prepare myself.
I am also a…[Read more]
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Grant Lile replied to the topic Video games in the forum Living with FA 6 days, 15 hours ago
I don’t have a console, but am thinking of getting one. I have read playing action-type games can help with coordination. Does anyone know what type of console is best for hand controlling?
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Christina Cordaro started the topic Ataxia UK and FARA in the forum FA Research, Scientific News, & Clinical Trials 6 days, 23 hours ago
Ataxia UK and FARA launched a partnership with the AI powered, patient-inspired technology company, Healx, to develop new treatments for Friedreich’s ataxia.
Click below to learn more about the partnership: https://bit.ly/3sWtml6
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Christina Cordaro started the topic Local Events in the forum Additional Resources 1 week ago
Yesterday, I attended a grassroots event organized by my sister to raise awareness and funds for FA Research. She partnered up with a local food truck in her neighborhood in Maryland. Proceeds from each pizza sold went to FARA (Friedreich’s Ataxia Research Alliance). The event was a huge success! The food truck sold out of 250pizzas in under 3…[Read more]
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Frankie Perazzola started the topic Video games in the forum Living with FA 1 week ago
I’ve had an Xbox for over a year now and have really enjoyed it. I like being able to get lost in the game while subconsciously working on my hand control and dexterity.
Do you play video games? If so, what games do you play? What kind of consulate do you have? Do you make any adaptations?
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Christina Cordaro started the topic Ataxia Advocacy Presentation – Johns Hopkins University Ataxia Center in the forum Additional Resources 1 week, 3 days ago
Today’s webinar discusses how to make a difference in the FA Community.
Date: Friday, April 9, 2021
Time: 1-2:30 PM EST
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Christina Cordaro started the topic FA Hacks with Cleaning Dishes in the forum Living with FA 1 week, 4 days ago
I recently found a new FA Life Hack- cleaning dishes with Dawn Ultra Platinum Powerwash Dish Spray. It’s much easier to use than squeezing liquid dish soap out of a dispenser or a bottle.
Have you ever tried?
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Frankie Perazzola started the topic Caring for a disabled child in the forum Parents & Caregivers of Those with FA 1 week, 5 days ago
Having a child is a hard enough. But having a child with a disability is even harder. As someone who aspires to become a parent one day or just in case someone reading this is looking for advice, what do you want other parents who have children with disabilities to understand? What do you wish you would have known earlier ?
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Christina Cordaro started the topic Physical Therapy in the forum Nutrition, Supplements, and Exercise 1 week, 5 days ago
Exercising and staying active is important while living with Friedreich’s Ataxia. How many of you here do physical therapy?
How many days of week, hours a day and which exercises works best for you and why?
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Christina Cordaro started the topic New Look for FA Forums in the forum About Our Forum 1 week, 6 days ago
Hi FA Community! We recently went through a redesign for the FA Forums website. Any feedback when using either a mobile device or desktop is truly appreciated!
You can send your comments to either moderator.
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Frankie Perazzola started the topic Treatment in public in the forum Living with FA 1 week, 6 days ago
We all have different experiences when it comes to going out and doing something in public.
Just curious, how do you personally handle being in public? Some people act extra weird when it comes to talking to a disabled person. Is it a lot for you?
Do you have any tricks and tips for interacting with others?
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Sheryl changed their profile picture 2 weeks ago
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Frankie Perazzola started the topic Going to the beach for traveling with a wheelchair in the forum Living with FA 2 weeks, 3 days ago
One of the hardest things to deal with here and Southern California is the lack of access to beaches. Although we have great weather and a flurry of beaches along the coast, not many places are accessible or provide ramps down to the water.
How was it to you? Do you have those trouble? Or are the beaches around you accessible?
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Christina D replied to the topic Mobility devices at restaurants in the forum Assistive Device Usage 2 weeks, 4 days ago
Eating out accessibility depends on the restaurant and time.
Most chains have enough room between tables between tables for a wheelchair.
If it’s busy (Friday or Saturday night) I’ll transfer to first available.Family-owned restaurants are a different story.
I’ve had to have diners at other tables move.
I’ve had waiters move an entire…[Read more] -
Christina Cordaro started the topic MOVE-FA Study for PTC-743 in the forum FA Research, Scientific News, & Clinical Trials 2 weeks, 4 days ago
Enrollment is open at sites in the U.S., Canada, and Australia.
MOVE-FA is a Phase 2/3 interventional study that will monitor the safety and efficacy of the drug Vatiquinone. This 2-year study is sponsored by PTC Therapeutics. Eligibility criteria include:
-Genetically confirmed FA with two GAA repeat expansions (currently, point mutations and…[Read more]
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