11/13/2025
November 12 • CJD Awareness Day 💟
There are dates your soul never forgets.
They don’t just live on a calendar, they live in your bloodstream.
For me, that day is November 12,
the day the world pauses to honor CJD Awareness,
and the day I remember the man who carried my heart, Kenneth.
Creutzfeldt-Jakob Disease.
Three words I had never heard before.
Three words that came like a storm,
stole my husband’s laughter, his voice, his life,
and left me holding pieces of forever that no longer fit.
CJD is rare. Untreatable. Fatal.
But what they don’t tell you is that it’s cruel,
it’s watching the person you love fade away while you stand helpless,
praying for science to move faster than time.
And yet, even in the silence, even in the loss,
hope refuses to die.
Because love won’t let it.
This past four months, I’ve donated, I’ve raised awareness,
I sat in virtual rooms with other broken souls who understood the language of this pain.
And in March, I’ll walk the halls of Capitol Hill,
not as a widow, but as a voice.
I’ll carry Kenneth’s name on my lips and his love in my lungs
as I plead with lawmakers to fund the research that could one day save someone else’s forever.
Because this is what grief does,
it breaks you open so something greater can pour out.
🟣 Share this post. Tell a story about someone you’ve loved and lost. Keep their light alive.
🟣 Donate to The CJD Foundation, help us turn pain into purpose.
🟣 Call your representatives, remind them that science matters, that time matters, that love matters.
🟣 And hug your people, because tomorrow is never promised.
Kenneth is more than a name I grieve —
he’s the heartbeat behind everything I do now.
And as long as I breathe,
I’ll make sure his story touches the world that took him too soon.
💜 For Kenneth. For Love. For the Cure. 💜
