NKH Crusaders

02/24/2026

She went into a coma for 20 days.

We lived between fear and hope, waiting for any sign that she was still fighting.

And she was.

Amelia was born with Nonketotic Hyperglycinemia (NKH), a rare disease that turns everyday milestones into medical battles. Seizures. Feeding tubes. Hospital stays. Endless appointments.

But she is not just her diagnosis.

She is a soft smile despite exhaustion.
She is quiet bravery.
She is strength in its purest form.

As part of our Rare Disease Awareness Campaign, Amelia’s family is sharing their story — not for pity, but for awareness, support, and a better future for every child living with NKH.

Read Amelia’s story here:
👉 https://www.nkhcrusaders.com/post/amelia-s-story-living-bravely-with-nonketotic-hyperglycinemia-nkh
💙 Alone we are rare.
💛 Together we are strong.

Amelia was never just a diagnosis. She is a little girl with a big heart, fighting quietly and bravely every single day. Amelia was born with a rare disease called Nonketotic Hyperglycinemia (NKH) — a condition that affects the brain and turns the simplest things we take for granted, like swallowi...

02/23/2026

He was never supposed to leave the NICU.
He was never supposed to see his first birthday.

Thaddeus just turned TWO.

What began as every parent’s happiest moment quickly became a diagnosis no one is prepared for: Non Ketotic Hyperglycinemia (NKH). Ventilators. Seizures. Surgeries. Hundreds of hospital days. And a future doctors said would never come.

But here he is.

Fierce. Sassy. A force to be reckoned with.

As part of our Rare Disease Awareness Campaign, Thaddeus’ mom is sharing their raw, honest journey — from devastating prognosis to finding strength in faith and in the NKH community.

If you’ve ever wondered what life with NKH really looks like… this is it.

Read their story here:
👉https://www.nkhcrusaders.com/post/from-nicu-to-two-years-strong-thaddeus-journey-with-non-ketotic-hyperglycinemia

Stories like this are why awareness matters.
Stories like this are why community matters.

💙 Alone we are rare, together we are strong. 💛

My son Thaddeus was born February 10th 2024. What should have been the happiest moment of life, became a nightmare. Newborn Thaddeus in the NICU After 12 days of watching my child never cry, never open his eyes and need ventilator support we had our diagnosis, Non Ketotic Hyperglycinema. From that m...

02/21/2026

Who stands with you in the darkest nights and uncertain futures? Your army! 💙 This Rare Disease Day, we need 10 families to share their stories and help create real impact. Will you be one of them? 🙋‍♀️ Send us an email to stand up, speak out, and join the army that refuses to let NKH remain invisible! 💛

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.

02/21/2026

💙 NKH Families: Important Conference Update 💙

Thanks to a recent grant, we have been able to lower the conference ticket price for April 15–16.

If you already purchased tickets before the grant was received, you will be refunded the price difference. An email has already been sent with details about how this will be handled.

Please take note of these upcoming deadlines:

🏨 Hotel room block discount ends March 1
🎟 Conference ticket sales close March 15

After those dates, discounted rates and ticket availability will no longer be guaranteed.

If you’re planning to attend, we encourage you to secure your tickets soon.

👉 Purchase here:
https://nkhcrusaders.app.neoncrm.com/nx/portal/neonevents/events?path=%2Fportal%2Fevents%2F30200

We can’t wait to be together in Boston.

💙 Alone we are rare, together we are strong. 💛

02/20/2026

Rare Disease Day is February 28.

It’s a day to shine a light on the 300 million people worldwide living with a rare condition — including our NKH community. For families facing Nonketotic Hyperglycinemia, rare is not just a word. It is hospital stays, therapies, seizures, feeding tubes, advocacy, resilience, and unwavering love.

This year, we want to highlight the real stories behind the diagnosis.

We need 10 NKH families willing to share their story with NKH Crusaders for Rare Disease Day 2026.

If you are willing to share your journey — the hard, the hopeful, the everyday — comment below or send us a message. Your voice could help someone feel less alone.

💙 Alone we are rare, together we are strong. 💛

https://www.nkhcrusaders.com/your-story

02/19/2026

Tonight’s the night.
Rare Connections is happening this evening.

If your day was long, your patience is thin, or you just need to be around people who get it — this space is for you.

🗓 Tonight — Thursday, February 19
⏰ 8:00 PM EST
📍 Virtual

👉 Join us here:
https://nkhcrusaders.app.neoncrm.com/forms/support-group

📲 Want a text reminder before the meeting?
Sign up here:
https://nkhcrusaders.app.neoncrm.com/forms/sg-texts

💙 Alone we are rare, together we are strong. 💛

02/18/2026

Looking for connection with people who understand rare disease caregiving?

Join us at Rare Connections — a moderated, confidential virtual support group for caregivers.

🗓 Tomorrow Evening, Thursday, February 19
⏰ 8:00 PM EST
📍 Virtual

👉 Sign up to receive the Zoom link:
https://nkhcrusaders.app.neoncrm.com/forms/support-group

📲 Want a text reminder before the meeting?
Sign up here:
https://nkhcrusaders.app.neoncrm.com/forms/sg-texts

💙 Alone we are rare, together we are strong. 💛

Two Online Meetings Monthly Join our community of devoted rare disease caregivers. Connect with others facing similar challenges to share resources and encouragement. Alone we are rare, together we are strong. Fill out the form to receive an email with the exclusive Zoom link for our monthly support...

02/17/2026

🔥 Win a Blackstone 28” XL Griddle Bundle! 🔥

Backyard cooking just leveled up — and it supports an incredible cause.

We’re raffling off a Blackstone 28” XL Griddle with Hardcover Bundle, perfect for family breakfasts, hosting friends, tailgates, and everyday meals that turn into memories.

🎟️ Raffle Details:
• 25 tickets total
• $20 per ticket
• One winner

What’s included:
🍳 Spacious 28” XL cooking surface
🔥 Dual burners for even heat and flexible temperature control
🛡️ Durable hardcover for protection
🧰 Essential accessories so you’re ready to cook right away

💙 All proceeds support NKH Crusaders, fueling critical research, caregiver support programs, and community initiatives for families impacted by Nonketotic Hyperglycinemia (NKH).

💸 Venmo welcome!
We know many of our longtime raffle supporters prefer Venmo, and you’re absolutely welcome to use it at checkout. If you’re able, we kindly ask that you consider adding a little extra to help cover processing fees so more funds go directly to our mission.

🎯 Grab your ticket before they’re gone:
👉 https://nkhcrusaders.app.neoncrm.com/nx/portal/neonevents/events?path=%2Fportal%2Fevents%2F35623

One winner. Endless meals. Real hope. 💙

02/17/2026

Big Thanks to Alex Almany who donated her Super Bowl winnings back to us in honor of her sister Nora 💙💛

02/17/2026

💙 NKH Families: Important Conference Update 💙

Thanks to a recent grant, we have been able to lower the conference ticket price for April 15–16 to $50 for a single admission.

If you already purchased tickets before the grant was received, you will be refunded the price difference. An email has already been sent with details about how this will be handled.

Please take note of these upcoming deadlines:

🏨 Hotel room block discount ends March 1
🎟 Conference ticket sales close March 15

After those dates, discounted rates and ticket availability will no longer be guaranteed.

If you’re planning to attend, we encourage you to secure your tickets soon.

👉 Purchase here:
https://nkhcrusaders.app.neoncrm.com/nx/portal/neonevents/events?path=%2Fportal%2Fevents%2F30200

We can’t wait to be together in Boston.

💙 Alone we are rare, together we are strong. 💛