Christina Cordaro

Have you signed up for the FA Patient Registry yet?

Create an account in the FA Global Patient Registry to receive notices regarding upcoming trials and studies for which you might be eligible!

Click below to sign up: https://fapatientregistry.org/

With the pandemic still being ongoing, has anyone picked up any more or new hobbies? I tend to find myself reading more and listening to new music. This definitely helps make time pass.

Rain always makes my symptoms of FA much worse. I tend to feel more fatigued and achy. I try to rest and take it easy as much as possible.

How does the rainy weather affect you and what remedies do you take?

When drinking liquids, I find it easier to use a straw to swallow the drink smoothly. I like to use a metal straw because it is reusable and keeps my drink cold.

What type of straws do you find most helpful?

Update:
Retrotope is seeking 8 more individuals ages 12-50 for a clinical for the drug, RT001.

For more information regarding the study and location sites, please click the link below:
https://www.curefa.org/clinical-trials/clinical-trials-active-enrolling/rt001-006-trial-10-31-2019

Did you hear?! Senator Patrick Leahy of Vermont just mentioned an FA patient member, Mary Nadon Scott in the supreme court justice hearings! Mary is a strong advocate for the FA Community and is hopeful to keep the Affordable Care Act!

https://m.facebook.com/story.php?story_fbid=10158682739147438&id=125588257437

Sometimes when I am trying to sleep st night, I experience from restless legs. What I do to help reduce this feeling is take Baclofen and CBD gummies.

Does anyone here suffer from restless legs? What remedies do you take?

With hotels opening back up at a limited capacity, has anyone been anxious to travel again? I know traveling with a disability can be worrisome as-is in terms of ADA accommodations.

With the stay at home orders being less strict, is it better and easier now to have your caregivier come to your house? What was the process like in the first few months of the panddmic?

Is anyone on here on a special diet that includes protein to boost energy? Working shift work can be tough, and I am looking to incorporate more proteins into my diet throughout the day so I am not as energy deprived.

FARA-EnergyBall-2020-Invitation

Saturday urdah, November 7th is the FARA Virtual Energy Ball. This annual event is to benefit the Friedreich’s Ataxia Research Alliance and USF Health Ataxia Research Center. This year will be broadcasted virtually in the comfort of your own home.

NAF and Boscov’s Flyer

The National Ataxia Foundation partnered with Boscov’s for their Friends Helping Friends fundraising sale. 20% isoff everything (a few exceptions) by selecting the National Ataxia Foundation at check-out and the NAF will get 5% of the total sale!

There are two sale dates this year instead of one. The dates are…[Read more]

Does anyone here who uses a wheelchair wear compression socks to help with swelling from sitting in a wheelchair all day?

What brand have you found that works the best?

Things are different these days and most of us now live in a virtual world. With the web more at our fingertips, we want the forums to be a place where we can readily connect and be there for one another to lean on.

Do you have any feedback about ways we might be able to improve our forums? Are there any topics that you would love to see discussed?

My favorite two brands to wear when I work out is Under Armour and Nike. I especially love the Nike 2 in 1 Tempo Luxe Shorts especially when I ride my trike. The compression shorts for the inner layer helps me move comfortably and is lightweight.

https://www.nike.com/t/tempo-luxe-womens-2-in-1-running-shorts-PfLl8r/BV2955-318

Do you have any…[Read more]