Christina Cordaro

This pastel week, reata Pharmaceuticals launched its FA Talks podcast on Spotify or Apple Podcasts. Tune in for FA Life Hacks, patient stories, and more. Happy listening! 

Rare Disease Day is almost a week away on the last day of this month. Last week, I shared an article on two different ways to get involved – either through social media or with our state’s government.

How will you be getting involved this year?

Rare Disease Day 2020: How You Can Get Involved

The Friedreich’s Ataxia Research Alliance (FARA) Anbassadors showcase different members of the FA Community in their weekly publishing. Here is where the ambassador program interview and share stories of those affected by FA.

Click here to learn more: http://www.curefa.org/meet-the-community

For dinner last night, I made a buffalo chicken chili in the crockpot. Crockpot meals are great for someone with FA who is too tired to cook after a long day of work because you can “set it and forget it”.

Do you have any kitchen hacks to help conserve energy?

How do you like to spend your days off from work? For me, I like to stay active because it gives me a sense of accomplishment. For instance, today I have Presidents Day off and I am meeting friends and catching up on chores, such as cleaning the apartment and doing laundry.

Do you like to also be active or rest?

I’ve recently noticed that when I sit for long periods of time, my legs become stiff  and I’m in pain. I always have my cane by side to relieve the cane.

Does anyone else experience this and how do you manage?

Each day, I take both B12 and amantadine (provided prescription  from my neurologist) at 100mg each. I feel like this helps me stay focused and keeps my fatigue levels down, especially during the work day.

• Do you take anything or have any tips to help manage fiatigue levels?

Last evening, I met up with a bunch of FAmily members for dinner because some were in the area for their clinical trial CHOP appointment s We thought it would be a great idea to catch up l er dinner.

There were two people in wheelchairs and myself with a rollator in the party. Before we sat down, the hostess showed us three different s…[Read more]

Does anyone have vision impairments due to FA?  If so, can you sbare what you do to manage it?