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Katie Griffith started the topic Celebrate! in the forum Living with FA 3 weeks, 4 days ago
Rare Disease Day might seem like a strange thing to celebrate. For most of us, it wasn’t a happy day when we or our loved ones were diagnosed.
As I personally have processed and accepted my son’s diagnosis of Friedreich’s ataxia, I do celebrate him and want others to understand what he is experiencing.
While we may not celebrate the disea…[Read more]
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Katie Griffith replied to the topic Service Dogs in the forum Parents & Caregivers of Those with FA 3 weeks, 5 days ago
We had a wonderful experience and definitely will be glad to answer any questions!
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Katie Griffith started the topic What do you wish people knew about rare disease? in the forum Living with FA 1 month, 2 weeks ago
Finding out you or your loved one has a rare disease is so overwhelming. Little by little as time goes on, you learn more about the disease and find ways to help cope.
When I explain Friedrich’s ataxia to others, I say that it is a progressive neuromuscular disease that currently has no treatment or cure. Then I explain the ways that it sp…[Read more] -
Katie Griffith posted a new activity comment 1 month, 2 weeks ago
Welcome, Brian! We are so glad you have joined FA Forums. We look forward to getting to know you better 🙂
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Katie Griffith replied to the topic Rare Disease Day is coming up! in the forum Living with FA 1 month, 2 weeks ago
Thanks for sharing! It is so scary but community has made all the difference for us as well.
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Katie Griffith started the topic Rare Disease Day is coming up! in the forum Living with FA 1 month, 3 weeks ago
This month, we will be discussing rare disease topics as we get ready to celebrate Rare Disease Day on February 28.
I clearly remember the day I first heard the words “Friedreich’s ataxia”. My son, Noah, and I were sitting in a pediatric neurologist’s office after years of trying to figure out his individual symptoms.
I googled it as we were w…[Read more] -
Katie Griffith replied to the topic Service Dogs in the forum Parents & Caregivers of Those with FA 1 month, 3 weeks ago
We just finished day 3, and we are tired, but it’s going well!
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Katie Griffith replied to the topic Attention: New rideATAXIA dates! in the forum FA Research, Scientific News, & Clinical Trials 1 month, 3 weeks ago
My family and I will be at rideATAXIA Gainesville!
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Katie Griffith 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
My family and I were at church recently, and an acquaintance of mine asked my son with FA why he was using his wheelchair that day instead of his walker. She was concerned and meant well, but he felt like it was a personal question and didn’t want to answer.
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HECTOR VALLE and
Katie Griffith are now friends 1 month, 3 weeks ago
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Katie Griffith replied to the topic Podcasts in the forum Parents & Caregivers of Those with FA 1 month, 3 weeks ago
I recently listened to Once Upon a Gene Podcast which is great for caregivers!
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Katie Griffith replied to the topic Service Dogs in the forum Parents & Caregivers of Those with FA 1 month, 3 weeks ago
Noah and I head to Orlando next week to start his training!
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Katie Griffith started the topic Being Constantly Late and Managing Schedules in the forum Parents & Caregivers of Those with FA 1 month, 4 weeks ago
Over the holidays, all three of my kids were home. We have all gotten used to our own schedules and routines, so things were harder with us all at home again.
If we all had to be somewhere at a certain time, it seemed like we were always late! I don’t enjoy being late, and it was frustrating to me a lot of the time. I seemed to constantly be hu…[Read more] -
Katie Griffith started the topic Share Your Story! in the forum Living with FA 2 months ago
BioNews invites the members of our rare disease communities to join us in recognizing Rare Disease Day in February by answering the question, “Why does rare disease awareness matter to you?”
Email your 150-200-word response to [email protected] along with two high-quality pictures of yourself that capture your “why.”
We encoura…[Read more]
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Katie Griffith posted a new activity comment 2 months ago
Welcome, Lisa! We are glad you have joined the FA Forums and look forward to hearing from your perspective.
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Katie Griffith posted a new activity comment 2 months ago
Welcome, Victoria! We are glad you have joined the FA Forums and look forward to hearing from your perspective.
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Katie Griffith started the topic Decision Making in the forum Parents & Caregivers of Those with FA 2 months ago
Life is full of decisions, big and small. Sometimes, I feel really overwhelmed, and making any size decision can be a challenge.
When you are a caregiver, not only are you responsible for your own decisions, but you also feel responsible to make the best decisions for your loved one.There is a podcast I enjoy called “The Next Right Th…[Read more]
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Katie Griffith replied to the topic What is your New Year’s resolution? in the forum Living with FA 2 months, 1 week ago
I forgot, I did make a goal on Goodreads to read 40 books this year!
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Katie Griffith replied to the topic Vehicles in the forum Assistive Device Usage 2 months, 1 week ago
We haven’t reached this point quite yet. Hopefully others who have can pass along some good info!
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Katie Griffith started the topic Small Victories in the forum Parents & Caregivers of Those with FA 2 months, 1 week ago
A new year seems like it should come with a clean slate. Unfortunately, problems from the past year don’t disappear once the calendar changes to a new one.
It often takes a long time to notice changes, and we tend to get discouraged because things aren’t happening more quickly.
Celebrate the small victories in your life and in the lives of th…[Read more] - Load More