• On any ordinary day, it is important that FA patients find shoes to wear that are comfortable and have support. This is especially crucial when it comes to walking on beach. You want to feel confident with the stability in your balance and walking.

    I have found that water shoes are the best fit for me to wear on the beacj. They are easy to…[Read more]

  • I am on summer vacation down the shore with my family on our annual summer vacation. This is my second time using a wheelchair on the beach and it is the best thing. I don’t have to worry about walking on the uneven sand and it’s easy to go into the ocean water.

    Have you ever used a beach wheelchair? Did you have a positive or negative experience?

  • I like wearing Vans with the extra support/cushion inside. I like them because they’re also flat and have a good grip on the bottom.

  • This fall the research alliance group, FARA is combining the Philly and Dallas rideATAXIA events and creating the rideATAXIA Global Challenge.

    Another virtual challenge will start on International Ataxia Awareness Day, September 25th, and will end on October 24th. This will be an effective way to raise awareness and funds for FA research during…[Read more]

  • As a parent or spouse of a loved one living with FA or being a caregiver, what is the hardest thing to see and overcome?I know for husband, it is difficult for him to see my progression slowly getting worse, whether it is my difficulty with walking or falling more easily.

    What is some words of advice you can provide to other caretakers?

  • NORD, the National Organization for Rare Diseases is encouraging patients to get involved and take a stand!

    Now, more than ever, rare disease patients need access to safe and affordable health care for both routine and COVID-19 related treatments. Act today to tell your Member of Congress to include policies that support rare disease patients in…[Read more]

  • Christina Cordaro posted a new activity comment 6 days, 20 hours ago

    Hi Casey,
    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]

  • With the pamdemic, some of us have more time to catch up on a favorite novel or discover a new one. It’s a great way to relax and unwind and to make the time pass.

    When enjoying a book do you prefer actual reading or playing an audio book? Is one method better than the other for you to lessen fatigue?

  • Christina Cordaro replied to the topic Massage frequency in the forum Living with FA 1 week ago

    I have only gotten two full body massages in my life, but it was one of the best feelings ever! It truly helps with reducing the numbness and relaxing the muscles and joint stiffness. I felt so relieved after. The hot stones only make it better!

  • @frankie-perazzola definitely because my legs are fatigued and tired. I feel like they “give out” and I just lose the strength to keep walking.

  • @davidr thank you for being so honey about your experiences. It sounds like we are going through the same challenges. I too am stubborn and let my pride get in the way. But it’s important to remember that mental health is just as important as physical health and to really take care of yourself.

  • I use a rollator for my main mode of transportation, but I have noticed that walking is becoming more difficult for me. My stability is getting worse and I tend to lose my balance and fall more.

    Has anyone else experienced this? Do you think this is a sign to switch to a wheelchair full-time?

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

    Hi Jenn,
    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]

  • My brother and myself are both confirmed being diagnosed with Friedreich’s Ataxia. I am thankful that my brother is not showing symptoms yet. He is 18 years old and about to go to college. My older sister who is 34 years old is about to get married and already thinking of her future and having children with FA in mind. She decided to get genetic…[Read more]

  • Christina Cordaro posted a new activity comment 1 week, 4 days ago

    That’s a great idea! This way. The children still feel involved as if they were attending school.

  • My husband and I love Hello Fresh. We pick two meals from there and then make two to three other meals. Hello Fresh makes things easier because the ingredients and meals are portion-controled, so we feel better eating it.

  • Christina Cordaro posted a new activity comment 1 week, 4 days ago

    Hi Ornella,
    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]

  • Are there any parents here with FA or that have children living with FA year has made the decision to homeschool because of COVID? A mother with FA I know decided to homeschool her two boys for this upcoming school year. She stated it is a lot of dedication and time wirh virtual meetings, training, etc.

    Are you thinking about doing the same? Do…[Read more]

  • Christina Cordaro posted a new activity comment 1 week, 5 days ago

    I agree. It can be challenging to adapt to new modifications especially when you were used to a certain lifestyle for so long. Just try to take each day as it comes!

  • Christina Cordaro posted a new activity comment 1 week, 5 days ago

    Hi Kenny!
    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]

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