Frustration is found around every corner in my life with Friedreich’s ataxia (FA). I get frustrated about many things, macro and micro. This can range from the inaccessibility of public spaces (macro) to struggling to find the armhole in my hoodie when I get dressed in the morning (micro).
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Winter is hard on me. The snows of January were incredibly beautiful, but the gray skies have left me feeling worn down and tired. The winter and cold weather are also hard on Amelia, our 13-year-old daughter with Friedreich’s ataxia (FA), and she does require an extra level of…
My high school emo self would feel deeply recognized in this column. I’ve always resonated with the eeriness of the 2001 film “Donnie Darko”; it’s a darkness that isn’t loud or theatrical, but rather solemn and quiet. It’s the kind that settles into your thoughts and asks questions without offering…
In December 2025, my husband, Kyle, and I traveled to the Children’s Hospital of Philadelphia to see neurologist David Lynch. It was the first time I had traveled for Friedreich’s ataxia (FA) care since transitioning to predominantly using a wheelchair. Therefore, much of the discussion centered on this transition.
My mom died almost 10 years ago. Her birthday is tomorrow, Jan. 27, the same day that Holocaust Memorial Day is observed, and I always think of her on it. She passed on many strengths, including her loyalty to those she loved. She always spoke of my grandfather with reverence,…
Friedreich’s ataxia (FA) is all-consuming. When I allow my experience with it to consume my thoughts, life with FA can seem like an insurmountable problem with no hope of rescue or normalcy. Living with FA and its symptom progression is entirely beyond my control. So what can…
On a chilly January day, my husband, Dave, and I took down our Christmas tree. I love those two to three weeks each year when my Christmas tree sparkles in the living room. I find my tree so magical for its beauty and for the ornaments laden with memories. There…
This morning, I did something I rarely do: I asked my children for help with writer’s block. Every Monday morning, I sit down at my computer to write about whatever is in my heart or on my mind as it relates to living with Friedreich’s ataxia (FA).
It is spectacularly beautiful outside. A wintry mix early this morning has left a coat of ice on everything, which the sun is now illuminating, leaving me stunned by the beauty around me. It’s a snow day here in my part of New England. Of course, I hope it…
As we drove down the street, the morning jam to music paused briefly when my eldest daughter said, “Don’t forget to go Dad’s way.” I smiled, knowing full well what she meant. Dad’s way was a shorter route to her school, but my daughter was also telling me, “Please pay…
My husband, Kyle, who will turn 38 next month, has been involved in sports since the age of 5. He played baseball in college and learned numerous life lessons that have shaped him into the kind of husband, father, co-worker, coach, and volunteer he is today. To provide some background,…
I have started fundraising for my next service dog so Wendy, my current service dog, can retire. It has not been easy, but I know it’s time. Wendy is always happy to help me, mainly by picking up things I drop, and she is always spot-on in public — except…
Recent Posts
- 5 Oxford research projects are aiming for new Friedreich’s ataxia treatments
- With PRV’s reauthorization, the rare disease community gets a rare win
- Finding grace for the FA caregiver during a long winter
- Finding meaning amid the darkness within
- New gene therapy may correct nerve and heart problems in FA: Study