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Hey everyone! Hope you’re all staying safe and healthy out there.

So with everything going on in the world, I thought I’d do a lighter post about entertainment recommendations for quarantine. I’m a huge pop-culture guru. This is just my personal list of book, movie, and Spotify recommendations. I’m leaving out TV, since there are just t…[Read more]

Chronic illness can disrupt your relationships. In her column, Frankie Perazzola reflects on the role her diagnosis played in her approach to friendships. Read more from Frankie here.

How has FA affected your relationships with friends and family?

Hey everyone! Hope you’re all staying safe out there.

My name is Kevin Schaefer, and I’m the Forums Director for this site’s parent company. I don’t have FA, but I have another rare disease called spinal muscular atrophy (SMA). You can read about my life and experiences in my column here.

As someone who is also a high-risk patient…[Read more]

Click here to read Matt Lafleur’s column about how physical therapy has helped him improve his physical strength.

When was the last time you had a moment like this at PT?

Physical therapy helps Kendall Harvey fight FA decline, but it also reminds her of the inevitability of her disease’s progression. Click here to read more from Kendall.

Can you relate to Kendall? How do you feel about your future with FA?

Click here to learn more about a study that suggests two neurofilament proteins hold promise as biomarkers of neurodegeneration in Friedrich’s ataxia (FA).

What do you think of this news?

My friend, @john-cernosek and I, both started fitness channels on YouTube for other folks with FA. There is a lot of content out there for the average person but the both of us saw a need for disabled workout videos as well.

Johns YouTube

Frankies YouTube

Have you been keeping up with your exercise regiment? Would these channels help…[Read more]

Despite constraints due to the coronavirus pandemic, the Paris-based IRDiRC continues efforts for 1,000 new therapies and better rare disease care by 2027. Click here to read more.

Do you believe this goal is attainable? Why or why not?

Frankie Perazzola was initially skeptical about the seriousness of COVID-19. That quickly changed after a visit to the supermarket. Click here to read more from Frankie.

How did you feel about COVID-19 initially? Have those feelings changed?

I live in Philadelphia, PA and as of 8am this morning,  the mayor of the city announced that public and private gatherings outside a single household is prohibited, with certain exceptions such as grocery shopping or medical reasons.

This is worrying because of the unknown of when this will end. Has any else hometown set the same rule? How…[Read more]

For a lot of us, staying home is almost normal. We just have a scary illness to worry about catching.

Anyway, with all this extra time, what have you been watching on Netflix or whatever streaming service you use? Are you binge watching a series? Or are you watching movies?

Stuck inside your home? The nutrition bar brand, RXBAR is trying a new initiative to bring back some normalcy into our lives.

Over the next 7 days, they will be live streaming no-equipment-needed RXercise workouts:

8 am CST – Yoga with Candace Ramos
12 pm CST – HIIT / Cardio with Anthony McClain
5 pm CST – Full Body with Gideon…[Read more]

This can be a difficult and confusing time as many people are faced with mental health and isolation issues.

One way I’ve found to help me cope with this is to color in a mandala coloring book. This activity is know to help:

– increase creativity and self-awareness
– reduces anxiety and relaxes muscles.
– gain self-confidence

How…[Read more]

Being quarantined for long periods of time can be maddening. If you are bored, here is a list of museums you can tour online!

https://www.usatoday.com/story/travel/2020/03/17/museums-tour-virtually-closed-for-coronavirus/5067867002/

What museums are you interested in seeing?

In order to deal with cabin fever, social distancing and mental anxiety, musical artists are performing live shows/concerts on their social media accounts for viewers to see worldwide.

Last night, I watched the live stream of the lead singer of Death Cab for Cutie, Ben Gibbard. I enjoyed it very much and I’m happy he chose to do this…[Read more]