Acting Together to Cure Friedreich’s Ataxia
One of my favorite Friedreich’s ataxia (FA) quotes comes from Ron Bartek, co-founder and president of the Friedreich’s Ataxia Research Alliance (FARA). He said, “Acting alone, there is very little any of…
My Darling Disability
— Kendall Harvey
Kendall Harvey is a wife and mother of two in Austin, Texas. She has been navigating life with Friedreich’s ataxia (FA) since her diagnosis in 2013 at the age of 25. She worked in marketing before “retiring” to be a stay-at-home-mom. She is an optimistic warrior fighting for a better future free of FA. Until that day comes, she aspires to inspire others with her column by detailing personal life lessons about grit and grace. Kendall shares a message of hope despite disability.
Featured Post
Happy 7th anniversary to ‘My Darling Disability’
This week marks the seventh anniversary of writing for Friedreich’s Ataxia News under the banner of “My Darling Disability.” I’m humbled by the thought that my words have impacted even one life in the…
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If These Wheels Could Talk
We’ve all heard the phrase “if these walls could talk.” We guess about the secret conversations that have taken place in a room and wonder what it would be like if the walls could…
Informing Children About Friedreich’s Ataxia
They say there is no parenting handbook. There is no universal system or code that can set you up for foolproof success in raising your children to be confident and competent adults. As the…
Feeling the 7-Year Itch With Friedreich’s Ataxia
I was diagnosed with Friedreich’s ataxia (FA) on Aug. 19, 2013. Before that day, I had never even heard of FA, let alone expected to think about this progressive, degenerative, life-shortening disease…
Finding the Ideal Life Partner
When I was a young girl making a list of my “dream guy” qualities, it was probably like everyone else’s. I wanted him to be kind, handsome, smart, funny, nice to his family,…
When Friedreich’s Ataxia Gives Me the Disabled Blues
Last week, my husband and I decided it was time for a change of scenery from our COVID-19 quarantine in Austin, Texas, and we rented a beach house on the coast for a…
Is the Grass Greener Without Friedreich’s Ataxia?
I keep thinking about the saying “the grass is always greener on the other side.” This is usually thrown around when you wish for something. We get it set in our minds that if…
Maintaining Abilities With Friedreich’s Ataxia
With Friedreich’s ataxia (FA), I am used to the reality that my abilities are progressively deteriorating. I am losing coordination, dexterity, cellular energy, and strength every single day. I am all too aware…
I’ve Chosen to Be Intentionally Courageous
Friederich’s ataxia (FA) has taught me a lot about intentionality. As an FA patient, I must be intentional both physically and emotionally to function at the capacity I desire. I used to take…
