More Than Awareness: What April 28th Means for Our Family
April 28th used to be just another day.
A regular day that came and went without meaning for me. No birthdays or anniversaries. There was no significance, no reason to remember it.
Until it wasn’t.
Now, April 28th is Global KIF1A Awareness Day, a day to bring attention to a rare, progressive neurological disorder known as KIF1A-Associated Neurological Disorder (KAND).
But for me, it is more than awareness.
It marks a line in my life—everything before, and everything after.
Before, I did not know what KIF1A was.
Before, I did not know words like dystonia or cerebellar atrophy would become part of my everyday language.
Before, I did not know how much strength it would take just to sit in a doctor’s office and hear something you cannot unhear.
And after…
After, everything changed, but somehow the world did not.
People still went to work. Kids still went to school. The sun still rose the next morning as if nothing had happened.
But everything had.
Because my daughter, Grace, now had a diagnosis.
KIF1A-Associated Neurological Disorder (KAND) is a rare genetic condition that affects the nervous system. It can impact mobility, muscle tone, coordination, vision, speech, and development. No two individuals are exactly the same, but for many families, it means navigating a progressive and often unpredictable journey.
For us, it meant finally having a name for what we had been seeing long before anyone could explain it.
It meant answers, but also more questions.
It meant stepping into a world of specialists, therapies, evaluations, and constant advocacy.
It meant learning how to speak up in rooms where you never expected to have to fight so hard to be heard.
But it also meant something else.
It meant seeing strength in a way I never understood before.
Grace faces challenges every single day that most people will never see or fully understand. And yet, she continues to show up with joy, determination, and a spirit that refuses to be defined by a diagnosis.
So today is not just about awareness.
It is about understanding that behind every rare diagnosis is a real person, a real family, and a story that deserves to be seen and heard.
It is about pushing for research, pushing for treatments, and one day, for a cure.
It is about community, connection, and making sure no family feels as alone as this journey can sometimes feel.
April 28 may be a day on the calendar.
But for families like mine, it is a reminder.
A reminder of how much has changed.
A reminder of how far we have come.
And a reminder of why awareness matters.
Because awareness leads to understanding.
Understanding leads to action.
And action is what brings hope.
If you have never heard of KIF1A before today, I encourage you to take a moment to learn about it, share it, and help spread awareness. It matters more than you know.
Grace's Superhero Story
What is KAND
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