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Christina Cordaro posted a new activity comment 2 days, 15 hours ago
Hi Alessandra,
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 2 days, 15 hours ago
Hi Terry,
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] -
Christina Cordaro started the topic Do you enjoy informational webinars? in the forum Additional Resources 2 days, 18 hours ago
Today, June 27th at 4 pm EST, LEXEO Therapeutics and Weill-Cornell Medical College will be giving a webinar on Gene Therapy for the Heart in FA. This webinar will provide information on investigational gene therapy for the treatment of the cardiac manifestations of FA, including details on two clinical trials.
Do you like attending these virtual…[Read more]
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Christina Cordaro started the topic How often do you plan your doctor's visits? in the forum Living with FA 1 week, 1 day ago
Because Friedreich’s Ataxia is such a rare disease, it is important to find a designated team of healthcare professionals to monitor your FA diagnosis. This group can include a neurologist, cardiologist, orthopedist and endocrinologist. The group may also include genetic counselor, physical therapist and occupational therapist.
To address my FA…[Read more]
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Christina Cordaro started the topic What brand mattress do you recommend to someone living with FA? in the forum Living with FA 2 weeks, 1 day ago
As most of us experience and know, fatigue is a major symptom of Friedreich’s ataxia. Getting sufficient sleep and rest is important when living with a chronic illness such as FA.
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What brand mattress do you recommend for someone with FA who is dependent on others and/or has severe curvature of the spine?
Do you have any recommendations for…[Read more]
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Christina Cordaro replied to the topic How many of you use more than one assistive device? in the forum Assistive Device Usage 2 weeks, 3 days ago
I definitely could use the lanyard around my neck to hold my phone because I always find myself dropping my phone out of my control. Thanks for the tip!
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Christina Cordaro replied to the topic How many of you use more than one assistive device? in the forum Assistive Device Usage 2 weeks, 3 days ago
Thank you for sharing your husband’s experiences! I’m glad you found wmany variations of works best for him!
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Christina Cordaro replied to the topic How many of you use more than one assistive device? in the forum Assistive Device Usage 2 weeks, 3 days ago
Having spare/extra batteries is a great idea! I’m always afarid of my power running low or out on me haha!
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Christina Cordaro posted a new activity comment 2 weeks, 3 days ago
Hi Judi,
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] -
Christina Cordaro started the topic How many of you use more than one assistive device? in the forum Assistive Device Usage 3 weeks, 1 day ago
People living with a disability have difficulty performing activities of daily living independently or even with assistance.
Throughout the past few years, I found that I need to use a variety of assistive devices for safety reasons. For example, my main assistive device is a rollator. I feel it is easier to maneuver when I am focusing on my…[Read more]
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Christina Cordaro posted a new activity comment 3 weeks, 2 days ago
Hi Dianne,
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] -
Christina Cordaro started the topic Reata Pharmaceuticals Update in the forum FA Research, Scientific News, & Clinical Trials 4 weeks, 1 day ago
Reata Pharmaceuticals announces FDA filing acceptance and priority review designation for the New Drug Application (NDA) for Omaveloxolone.
Priority review means that the FDA has 6 months to review vs. the standard 10 months giving an action date of November 30th, 2022. Then, the FDA has to communicate whether it accepts, rejects, or needs more…[Read more]
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Christina Cordaro started the topic Who else deals with neuropathy all year long? Any tips? in the forum Living with FA 1 month ago
A common symptom of Friedreich’s Ataxia can be neuropathy in the hands and feet. Neuropathy can cause the hands and feet to turn purple due to pain, tingling, and sensitivity in the nerves.
This always happens to me when the weather is cold because I lose feeling and sensation in both. However, I’ve noticed this occurring in the warmer months…[Read more]
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Christina Cordaro started the topic Making Summer Activities Accommodating for FA in the forum Living with FA 1 month, 1 week ago
The warmer months are finally here! Some days have made it feel like summer has made its return.
What are some summertime activities that you like participating in? What accommodations do you make so the activities aren’t impeded by your Friedreich’s ataxia?
I ride a recumbent trike which is low to the ground to help with balance and sta…[Read more]
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Christina Cordaro replied to the topic Describing FA to Others in the forum Living with FA 1 month, 2 weeks ago
I like your idea of saying something positive and not focusing on our limitations. There is still so mchh we can do, even it has to be done a different way.
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Christina Cordaro posted a new activity comment 1 month, 3 weeks ago
Hi Ashlyn,
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] -
Christina Cordaro started the topic Describing FA to Others in the forum Living with FA 1 month, 3 weeks ago
It always seems like a difficult situation when I describe exactly what FA is when other people ask me. I feel like there are many complex answers that can go into further detail. Over the years, my go-to response is simple– I have a neuromuscular disorder where my speech, balance, and walking are affected over time.
How would you describe FA to…[Read more]
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Christina Cordaro replied to the topic Have you ever hosted a grassroots event? in the forum Additional Resources 1 month, 3 weeks ago
Thank you so much! I am very pleased with how the event turned out, considering the rainy weekend and still being in a pandemic. Already looking forward to next year!
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Christina Cordaro started the topic Have you ever hosted a grassroots event? in the forum Additional Resources 1 month, 4 weeks ago
On Sunday this week is Mother’s Day, which is also my family’s annual 5K Race for Christina. After the ongoing pandemic of two years, this will mark the 8th year of having the event.
In a past column, I wrote the necessary steps to take while planning an event. Even after time passed, the information was still relevant and resourceful to help…[Read more]
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Christina Cordaro replied to the topic Reata Pharmaceuticals – Omaveloxolone Update #5 in the forum FA Research, Scientific News, & Clinical Trials 1 month, 4 weeks ago
I agree that the waiting game may endless. However, I am still hopeful because a there is a company out there that is working and striving for the same end goal! Everything these days is up in the air, but i am thankful something is at least in the works.
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