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Christina Cordaro started the topic Canceling Plans in the forum Living with FA 3 days, 17 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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Christina Cordaro started the topic Ataxia UK and FARA in the forum FA Research, Scientific News, & Clinical Trials 5 days, 17 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 6 days, 7 hours 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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Christina Cordaro started the topic Ataxia Advocacy Presentation – Johns Hopkins University Ataxia Center in the forum Additional Resources 1 week, 2 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, 3 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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Christina Cordaro started the topic Physical Therapy in the forum Nutrition, Supplements, and Exercise 1 week, 4 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, 5 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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Christina Cordaro started the topic MOVE-FA Study for PTC-743 in the forum FA Research, Scientific News, & Clinical Trials 2 weeks, 3 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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Christina Cordaro started the topic Transitioning to Adulthood Webinar hosted by NORD in the forum Additional Resources 2 weeks, 4 days ago
As rare disease patients approach adulthood, they face the transition from parent-supervised pediatric care to more independent adult models and take ownership of their care. This change can seem daunting for patients and parents, especially when dealing with rare disorders, like FA.
Join NORD to learn how to plan for this change and to hear from…[Read more]
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Christina Cordaro started the topic Beta Blockers in the forum Living with FA 2 weeks, 5 days ago
For those of you that have heart complications, are you taking beta blockers? I saw for one patient that their heart palpitations and tremors have nearly ceased!
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Christina Cordaro replied to the topic Pets in the forum Relationships & FA 2 weeks, 6 days ago
Let us know how it goes!
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Christina Cordaro started the topic Hobbies/Interests in the forum Living with FA 2 weeks, 6 days ago
What are some of your hobbies and interests? What do you enjoy doing most? Have you discovered any new ones since the pandemic began a year ago?
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Christina Cordaro replied to the topic Vaccine in the forum Coronavirus (COVID-19) and FA 3 weeks, 2 days ago
@tina1995 I got my first dose this past Wednesday and have only felt soreness in my arm. Today has been better.
I am worried about the 2nd dose because of those symptoms.
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Christina Cordaro replied to the topic Pets in the forum Relationships & FA 3 weeks, 2 days ago
@grant-lile a cat maybe good because I hear they are less manageable. But there’s nothing than a better than a dog so excited to see you when you come home through the door!
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Christina Cordaro replied to the topic Pets in the forum Relationships & FA 3 weeks, 4 days ago
I recently got a puppy, and I have difficult taking him out for walks. It is difficult while managing my rollator and holding the leash. This makes me sad because I feel as though I can’t fully take care of him and my husband has to do double work.
Does anyone else run into this issue?
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Christina Cordaro started the topic rideATAXIA Coastal Challenge in the forum Additional Resources 3 weeks, 5 days ago
rideATAXIA Gainesville and SoCal is l coming together in one virtual effort to raise funds and awareness for Friedreich’s ataxia researh. The West and East coast FA communities will be going head to head to see who can accrue the highest community score during our 10-day virtual cruise.
To register, donate and learn more, click b…[Read more]
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Christina Cordaro started the topic Working From Home in the forum Coronavirus (COVID-19) and FA 3 weeks, 6 days ago
Who is still working from home due to the pandemic? I currently am and with things going back to “normal”, I am so hesitant and nervous with going back to office.
Working from home has saved my energy and fatigue levels, especially working “shift work” relating to hotels.
Is anyone else worried going through this as well?
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Christina Cordaro started the topic COVID19 Updates and FA in the forum Coronavirus (COVID-19) and FA 1 month ago
Given the developments on the vaccine front for COVID-19, an updated information sheet has been posted on the Friedreich’s Ataxia Research Alliance’s website.
Click below to learn more on virus vaccines and mRNA vaccines: https://bit.ly/3vxMyrf
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Christina Cordaro started the topic COQ10 vs. Idebenone in the forum Nutrition, Supplements, and Exercise 1 month ago
Both COQ10 and Idebenone are similar dietary supplements to benefit FA and the symptoms.
In the beginning of my FA diagnosis, I would intake 400mg of COQ10 daily. Now I take 1,500mg of Idebenone because I feel that it’s stronger and helping me better.
What experiences, if any do you have with the two?
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Christina Cordaro started the topic Vaccine in the forum Coronavirus (COVID-19) and FA 1 month ago
With President Joe Biden suspecting the vaccine to be available to everyone by May 1st, how does this make you feel?
Are you more eager or hesitant to get the vaccine?
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