@christina-logan
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Christina Cordaro started the topic How will you show your stripes for Rare Disease Day? in the forum Living with FA 1 month, 1 week ago
The zebra has become the official symbol of rare diseases. In honor of the mascot, The National Organization for Rare Diseases (NORD) encourages those with or by a rare disease to wear striped clothing and accessories.
Wearing stripes can start a conversation that helps others learn the facts about the prevalence and challenges of rare diseases.…[Read more]
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Christina Cordaro started the topic 5 ways to make your voice as a patient advocate heard in 2023! in the forum Additional Resources 1 month, 2 weeks ago
Rare Disease Day is at the end of this month, on February 28th. Although every day is important to raise awareness of Friedreich’s Ataxia, this dedicated day is reserved to make an impact on the 300 million people globally who live with a rare disease.
Don’t know where to start? The National Organization for Rare Diseases (NORD) lists ways to…[Read more]
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Christina Cordaro posted a new activity comment 1 month, 3 weeks ago
Hi Holly,
Thank you 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 posted a new activity comment 1 month, 3 weeks ago
Hi Brian,
Thank you 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 replied to the topic Rare Disease Day is coming up! in the forum Living with FA 1 month, 3 weeks ago
My family and I were initially confused, scared and frustrated that this was happening. We knew getting involved and meeting other families going through the same thing would help, so we did that right away.
When my brother was diagnosed a few years after me, we felt more peepared having all the right tools, resources and connections.
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Christina Cordaro replied to the topic Service Dogs in the forum Parents & Caregivers of Those with FA 1 month, 3 weeks ago
I’m so glad to hear it’s going well!
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Christina Cordaro replied to the topic Attention: New rideATAXIA dates! in the forum FA Research, Scientific News, & Clinical Trials 1 month, 3 weeks ago
Nice! I will be at the Philly location!
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Christina Cordaro replied to the topic How do you answer awkward questions about FA from family and/or friends? in the forum Relationships & FA 1 month, 3 weeks ago
That’s a tough one, because not everyone understands having to use multiple assistive devices depending on the situation.
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Christina Cordaro started the topic Attention: New rideATAXIA dates! in the forum FA Research, Scientific News, & Clinical Trials 1 month, 3 weeks ago
rideATAXIA is a nationwide program of bike rides that welcomes people of all abilities to ride and to raise funds for FARA’s (Friedreich’s Ataxia Research Alliance) mission to treat and cure FA through research.
The 2023 dates and locations have been announced!
Who plans on attending and at which location?
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Christina Cordaro replied to the topic Service Dogs in the forum Parents & Caregivers of Those with FA 1 month, 3 weeks ago
Thinking of you both! Keep us posted on how everything goes!
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Christina Cordaro posted a new activity comment 2 months ago
Hi Zafer,
Thank you 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 replied to the topic Romantic relationships in the forum Relationships & FA 2 months ago
Whatever you decide to do, I hope it works out for the best for the both of you!
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Christina Cordaro started the topic How do you answer awkward questions about FA from family and/or friends? in the forum Relationships & FA 2 months ago
Everyone in the FA community can relate to having to deal with awkward questions when it comes to being asked about Friedreich’s Ataxia.
Can you provide an example of one you received? Who was it from? What were your response and reaction?
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Christina Cordaro replied to the topic Romantic relationships in the forum Relationships & FA 2 months ago
Hi Victoria,
Thank you for sharing your story! You definitely have dealt with a lot, especially with FA playing a major factor in every life event.
Has your husband ever tried telling you how he feels and how things maybe affecting him? Do you think it would be good if you two seek professional help and talk through things?
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Christina Cordaro replied to the topic How do you manage your affected speech? in the forum Living with FA 2 months ago
Please share your experience(s) if you do see a speech therapist! I hope it is beneficial for you.
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Christina Cordaro posted a new activity comment 2 months ago
Hi Victoria,
Thank you 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 months ago
Hi Lisa,
Thank you 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 replied to the topic What is your New Year’s resolution? in the forum Living with FA 2 months ago
Let me know if you have any recommendations!
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Christina Cordaro replied to the topic Vehicles in the forum Assistive Device Usage 2 months ago
Same, I havent gotten here yet. But hopefully those who have been through this, can share their experience!
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Christina Cordaro replied to the topic What is your New Year’s resolution? in the forum Living with FA 2 months ago
I believe in you you, Karina!
#1-#3 are part of my resolutions too!
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