• 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]

  • 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]

  • Christina Cordaro posted a new activity comment 3 weeks ago

    Hi Jesse,
    Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of our c…[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]

  • Christina Cordaro posted a new activity comment 3 weeks, 1 day ago

    Hi Tony,

    Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of ou…[Read more]

  • 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]

  • I was due to have my annual checkup appointment with my neurologist the end of this month. However, I  just found out that the in-person visit of neurological and heart testing portion is now delayed for at least two months because of the coronavirus.  I was disappointed because I like to see how my progression is measured year after year a…[Read more]

  • Christina Cordaro posted a new activity comment 3 weeks, 6 days ago

    Hi Jack,
    Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part…
    [Read more]

  • A part of the yearly check-ups with your neurologist for FA, seeing cardiologists crucial. Heart conditions and cardiomyopathy can be symptoms of FA. It is important to get routine heart tests of an EKG and Echo-cardiogram.

    I get these tests done every year when I go for my one visit. How about you? How often do you see it cardiologist?

  • I used to be an outpatient for physical therapy at a  local hospital. Once I learned the exercises and became sufficient with them on my own, my physical therapist gave me the same program to complete at home.

    2-3 times a week, I work on my core, balance and stretching exercises. I feel as though this helps builds strength back in my legs…[Read more]

  • Christina Cordaro posted a new activity comment 4 weeks, 1 day ago

    Hi Anthony,
    Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part…
    [Read more]

  • Christina Cordaro posted a new activity comment 4 weeks, 1 day ago

    Hi Harriet,
    Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part…
    [Read more]

  • I have a stationary recumbent bike to use in my apartment when I can’t go outside. But when it is nice out, I like to ride my Catrike recumbent trike ina local park! I agree that it helps regain independence and freedom back as walking becomes more difficult to do.

  • This clothing line offers adaptive clothing while still being stylish to children and adults with disabilities. TH has given the disabled community a new, easier way to dress with magnetic button shirts side zipper pants and more!

    What type of clothing would make getting dressed easier for you?

    Go to Tommy.com now and start exploring…[Read more]

  • FA patient, Leah Alstin came up with the concept of a user-friendly reusable cup for people with fine motor skills. The reusable cup label Ruby Seven (named after her children’s middle names) which sees $5 from every sale forwarded to the Friedreich’s Ataxia Research Alliance (FARA).

    Click here to view the features and purchase. How do you…[Read more]

  • Christina Cordaro posted a new activity comment 1 month ago

    Hi Chris,
    Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part…
    [Read more]


  • For clinical  trials, there can be limitations for patients to participate. For example, location and eligibility are major decision makers.
    HIV Therapy Etravirine just announced  it will be entering a Phase 2 Trial and to be eligible, patients must be able to complete a functional test of riding a stationary bicycle in a laid-back reclining p…[Read more]

  • Christina Cordaro posted a new activity comment 1 month ago

    Hi Connie,
    Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part…
    [Read more]

  • Christina Cordaro posted a new activity comment 1 month ago

    Hi Erin,
    Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part…
    [Read more]

  • Please take a moment to watch this #WhatMakesMeRare video in honor of Rare Disease Day! What speaks out to you the most? How did you celebrate the day this year?

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