Katie Griffith

Jan 16, 2025 | friedreichsataxianews.com | Kendall Harvey |Steve Bryson |Katie Griffith |Sean Baumstark

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 Friedreich’s ataxia (FA) and broader rare disease communities, and I plan to continue to honor that responsibility for as long as I can.

Jun 10, 2024 | friedreichsataxianews.com | Jean Ker Walsh |Steve Bryson |Sean Baumstark |Katie Griffith

Mother’s Day is a tough one for me. My husband, Dave, and I lost a much loved, wanted, and planned-for baby in 1999. My mom died in 2016, and Dave’s mom died in early 2023. So we decided to honor Mother’s Day this year by going to Portland, Maine. I love to travel for fun, but all my accoutrements and needs with Friedreich’s ataxia (FA) make it complicated. Among FA’s symptoms are poor balance and coordination, as well as declining leg strength.

Feb 15, 2024 | friedreichsataxianews.com | Kendall Harvey |Katie Griffith

Most people know the Jackie DeShannon song that goes, “What the world needs now is love, sweet love/ It’s the only thing that there’s just too little of.”While I can think of a few more things that there’s just too little of, I wholeheartedly agree that the world needs more love. I think I’d be hard-pressed to find someone who wouldn’t appreciate more love from their neighbors, enemies, and themselves. This makes me wonder, what would more love look like in my life? Where is love lacking?

Feb 15, 2024 | friedreichsataxianews.com | Sean Baumstark |Kendall Harvey |Katie Griffith

I’m just a few weeks from crossing the five-year mark since writing my first column for Friedreich’s Ataxia News. With that milestone approaching, I went back and read some of my old columns. Many made me chuckle, bringing fond memories to the front of my mind, while a few reminded me of some of the frustrations I’ve dealt with because of Friedreich’s ataxia (FA). However, that introductory column stood out and has reignited my quest to become the best version of myself.

Nov 17, 2023 | friedreichsataxianews.com | Elizabeth Hamilton |Kendall Harvey |Sean Baumstark |Katie Griffith

Here come the holidays! This magical season that brings people together amid specific traditions, unrealistic expectations, and uncomfortable conversations has been the source of so many Hollywood hits. Then enters Friedreich’s ataxia (FA), which almost always spins life upside down. Who’s excited? I hardly remember my parenting days before FA arrived on the scene for our daughter Amelia, age 11. Now it’s woven into our daily lives, and some days I just want a break.