Who Is Your Army?: Rare Disease Day 2026
- 5 hours ago
- 2 min read
Who stands with you when the fight gets hard? Who shows up when the nights are long, the answers are few, and the future feels uncertain?
That is your army.
NKH Crusaders is not just a Facebook page. It is not just a name. It is a movement built from parents, caregivers, advocates, researchers, and warriors who refuse to accept silence, stagnation, or “this is just how it is.”
Our Facebook page has nearly 5,000 followers.
Those 5,000 followers each have hundreds, some thousands, of their own connections.
That is not just a number. That is power.
But power means nothing without action.
How Much Are You Willing to Fight?
It’s easy to stand on the sidelines. It’s easy to watch others carry the weight. It’s easy to complain that nothing is changing while waiting for someone else to make it happen.
But change does not come from waiting. Change comes from movement.
If we want the world to know that NKH Crusaders exists…
If we want families across the globe to find support, hope, and resources…
If we want researchers to have the real stories, real data, and real funding they need…
Then we must move. Together.
Rare Disease Day 2026: This Is Your Call to Action
We need:
Stories from families living this journey, so researchers understand the real impact of NKH
Data for our registry, because data saves lives and accelerates discovery
Funds to directly support research and progress
Voices that reach beyond this page and into the world
Do not say you can’t.
You can share a post. You can tell your story. You can help connect another family. You can donate, fundraise, or advocate.
Every action, no matter how "small" it may seem, creates momentum.
This Is Your Child’s Future Too
Stop waiting for others to do what you can do today. Stop assuming someone else will carry the burden.
This is personal. This is urgent. This is about our children, our families, and the future we are fighting for.
Action creates movement.
Movement creates change.
The time is NOW.
This Rare Disease Day, 2026:
Stand up
Speak out
Share
Support
Be part of the army that refuses to let NKH remain invisible.
We move forward; together.
I Need 10 Families. 10 People.
I am calling on 10 families. 10 individuals who are willing to step forward and work with me to help create real, measurable change.
Not someday.
Not “when things slow down”
Now.
Are you one of them? Are you willing to take ACTION?
You will not be left to figure this out alone. We will show you how to create and use a platform, how to share your story, and how to drive real impact that reaches families, researchers, and the world.
This is how movements grow. This is how awareness turns into action .This is how the future changes.
Stand up. Step forward. Join the army.
Are you one of the 10?
Kristin Archibald, Mother, Cargiver, Founder and Executive Director of NKH Crusaders
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