Activity

By no means am i an expert in the feild of physical activity or fitness but I plan on it one day.

However, I am really good at utilizing credited resources. I can find the answer to most questions with relying on the professionals in the industry as well as finding the appropriate research and studies to answer any questions you may have.

With…[Read more]

Hopefully you’ve noticed some awesome changes to the website. Not only does it look better but it should be a bit easier to navigate 🙌🏼

With that being said, is there any other changes you’d like to see? Is there anything else the team should take note of?

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]

One thing that I have figured out about myself is that I love being social and around people and I also love being in solitude and on my own even more.

In order for me to be an extrovert, or be social, it takes a lot of planning and preparing. Basically, I have to know about a situation well before so I can mentally prepare myself.

I am also a…[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]

I’ve had an Xbox for over a year now and have really enjoyed it. I like being able to get lost in the game while subconsciously working on my hand control and dexterity.

Do you play video games? If so, what games do you play? What kind of consulate do you have? Do you make any adaptations?

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?

Having a child is a hard enough. But having a child with a disability is even harder. As someone who aspires to become a parent one day or just in case someone reading this is looking for advice, what do you want other parents who have children with disabilities to understand? What do you wish you would have known earlier ?

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.

We all have different experiences when it comes to going out and doing something in public.

Just curious, how do you personally handle being in public? Some people act extra weird when it comes to talking to a disabled person. Is it a lot for you?

Do you have any tricks and tips for interacting with others?

One of the hardest things to deal with here and Southern California is the lack of access to beaches. Although we have great weather and a flurry of beaches along the coast, not many places are accessible or provide ramps down to the water.

How was it to you? Do you have those trouble? Or are the beaches around you accessible?

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]