Activity

Below are some local and easy ways to get involved!

• Wear striped clothing and/or accessories (the zebra is the US symbol of rare disease) in support of the rare disease community on Feb 29.
• Take a selfie and post a message to social media. Don’t forget to tag #RareDiseaseDay and #CureFA
• Change your profile photo on social media to r…

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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! 

UCLA and FARA will be putting on a scientific symposium tomorrow. Followed by RideAtaxia putting on their annual SoCal ride.

Here are the links for more information!

Symposium

rideATAXIA

If you’re around,I would love to meet you!

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

Sometimes, it’s difficult enough to get motivated to go to the gym. But, over the years I have realized it is better to focus on a couple of muscles and target areas of the body per day rather than working out everything every day.

For example, when I first started off in the gym, I didn’t really have any direction so I would hop on any mac…[Read more]

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

This week, I discussed how I preferr to be in isolation. Most of my time, I am by myself and at home. I don’t enjoy going out as much and have realized how essential isolation is to recharging my batteries and accomplishing goals that I have for myself.

Click here for the article

How do you feel about isolation? Is it something you p…[Read more]

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?

In previous topics, I have opened up the conversation to one strain of marijuana. Here is some facts about the other strain, sativa.

Article here
This belief that indicas, sativas, and hybrids deliver distinct effects is so deeply rooted in mainstream cannabis culture that budtenders typically begin their strain recommendations by asking you…[Read more]

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?