Christina Cordaro

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]

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

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]

Today’s webinar discusses how to make a difference in the FA Community.

Date: Friday, April 9, 2021

Time: 1-2:30 PM EST

To Join: https://jhjhm.zoom.us/j/93273974042#success

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?

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?

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.

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]

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]

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!

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?

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]

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?

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

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?

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?