NKH Crusaders

01/08/2026

We’re excited to share that the Wikipedia page for Glycine Encephalopathy (Nonketotic Hyperglycinemia, NKH) has undergone significant improvements to better serve families, clinicians, researchers, and the broader medical community.

These updates were completed by Dr. Mackenzie Gamble PhD., Research Advisor for NKH Crusaders, ensuring the content reflects current scientific understanding while adhering strictly to Wikipedia’s medical and editorial standards.

The article has been expanded and refined to align with the structure and rigor of other well-established medical pages, with a focus on accuracy, clarity, and a neutral, encyclopedic tone.

What’s new and improved:
• A comprehensive introduction and summary
• Refined Causes, Pathophysiology, and Diagnosis sections
• Expanded Management section
• New History, Research, and External Resources sections
• Updated references and medical citations
• Standardized formatting following Wikipedia’s medical style guidelines (MOS:MED)
• Added visuals to support understanding

Why this matters: Wikipedia is often one of the first places families, medical professionals, and students turn for information. Having a clear, well-structured, medically rigorous NKH page helps ensure accurate understanding of this rare condition and supports earlier recognition, informed care, and continued research interest.

We’re grateful for the expertise and time invested to strengthen this public-facing resource and proud to see NKH represented with the depth and credibility it deserves.

💙 Alone we are rare, together we are strong. 💛
https://en.wikipedia.org/wiki/Glycine_encephalopathy

01/08/2026

Please listen to Chancee story with Lucas . Thank you Chancee for sharing your story 💜

Join us in this deeply moving interview with Chancee Culp, a devoted mother, fierce advocate, and Marketing Director for NKH Crusaders.Chancee shares her per...

01/07/2026

Introducing Mackenzie Gamble, PhD., NKH Crusaders Research Advisor

Mackenzie Gamble, Ph.D., is a biomedical scientist whose interdisciplinary research spans neuroscience, sleep, and public health. He earned his doctorate in Molecular and Translational Medicine from Boston University, where he received specialized training in neurophotonics and addiction science. Over the past decade, Mackenzie has mostly focused on understanding brain function and dysfunction through pharmacological studies, analyzing how drugs impact behavior and physiology in laboratory models. He holds a bachelor’s degree in neuroscience from Stonehill College and received his formative research training at Boston VA Medical System/Harvard University. Mackenzie has a strong commitment to turning scientific insights into real-world solutions for complex health challenges. He was invited to join NKH Crusaders by Kristin to bring in-house research and science expertise.

Learn More: nkhcrusaders.com/about

01/06/2026

Start the year by connecting with people who understand your journey.

The Rare Connections Support Group is here for rare disease caregivers. Whether it’s your first time joining or you're returning after a tough season, this space is yours.

📅 Our first meeting of 2026 is today 12:00 PM EST!
Join us and take a breath, we’ll meet you where you are.

💻 Sign up here:
https://www.nkhcrusaders.com/support-group

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

Join the NKH Crusaders support group to connect with families and caregivers affected by Non-Ketotic Hyperglycinemia, and other rare diseases. Share experiences, find encouragement, and build a network of support in a compassionate community.

01/06/2026

Just a reminder — our next Rare Connections Support Group meets tomorrow afternoon, Tuesday, January 6th at 12:00 PM EST 🧡

Whether you need a space to talk or just want to listen in, this group is open to all rare disease caregivers. Come exactly as you are.

Sign up today to get the Zoom link delivered to your inbox:
👉 https://www.nkhcrusaders.com/support-group

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

Join the NKH Crusaders support group to connect with families and caregivers affected by Non-Ketotic Hyperglycinemia, and other rare diseases. Share experiences, find encouragement, and build a network of support in a compassionate community.

01/04/2026

The hardest part isn’t the stares from strangers or the questions that come early on.
It’s what happens after the first wave of support fades.
With NKH, the journey doesn’t have a clear finish line.
It stretches on—longer, quieter, and often lonelier, especially as children get older and the attention shifts elsewhere.
Appointments continue. Care never stops.
Families keep showing up every day, even when the world stops asking how they’re doing.
Families living with NKH don’t stop needing support, advocacy, research, or community.
We just stop talking about the long road that comes after diagnosis.
NKH Crusaders exists for that road—for the moments no one sees, the years that follow, and the families who keep going.

NKH Crusaders is committed to assisting those affected by NKH through patient advocacy, caregiver support, and funding the research to advance safer NKH treatments.

01/02/2026

✨ New Year. New Connections. Same Safe Space. ✨

As we welcome 2026, we invite all rare disease caregivers to make space for something just for you.

Our Rare Connections Support Group meets twice a month — a place to listen, connect, and breathe alongside people who get it.

💬 Sign up once and join us any time:
https://www.nkhcrusaders.com/support-group

Let this year be one of connection, not isolation.
💙 Alone we are rare, together we are strong. 💛

Join the NKH Crusaders support group to connect with families and caregivers affected by Non-Ketotic Hyperglycinemia, and other rare diseases. Share experiences, find encouragement, and build a network of support in a compassionate community.

12/26/2025

**When Your Vision Doesn’t Match Your Reality**

I had a vision for today.
A full house. Laughter. Traditions.
The kind of moments you assume you’ll always have.

But today didn’t look like the picture in my head—and if I’m being honest, it felt heavy.

Life has changed.
The kids are growing and building lives of their own.
Parents are aging.
Children are sick.
Illness enters the room uninvited.
A loved one is no longer around the table
Seasons shift whether we’re ready or not.

And sometimes, no matter how hard we work, how positive we try to be, how much we believe—we wake up and realize our **reality no longer matches the vision we’ve been holding onto.**

That disconnect can feel like loss.
It can feel like failure.
It can make you question whether you’re doing enough—or being enough.

But here’s what I’m learning:
When the vision doesn’t match the reality, it doesn’t mean the vision was wrong. It means **life is asking us to evolve it.**

There can be gratitude *and* grief.
Joy *and* sadness.
Blessings *and* brokenness—existing side by side.

Sometimes growth doesn’t look like winning.
Sometimes it looks like **enduring, adapting, and continuing anyway.**

Holidays have a way of concentrating all of this into one day. When the picture in your heart no longer matches what’s in front of you, it can hurt deeply—even when there is love.

And sometimes, joy simply isn’t available on demand.

This Christmas doesn’t erase the beautiful ones that came before it. And it doesn’t mean future holidays won’t hold warmth again—they’ll just look different. Different doesn’t mean empty. It means **rewritten**—slowly, gently—with room for both love and loss to coexist.

If it helps to hear this plainly:
It is okay that today was hard.
It is okay that joy didn’t show up.
It is okay to miss what you had and still love what you have.

You are not behind.
You are not failing at life.
You are navigating a season of transition, grief, and deep caring—and that is a lot to carry.

To my fellow **NKH Crusaders**—if your vision for today didn’t match your reality, it is okay to be sad. It’s okay to feel angry. Give yourself grace. And when you’re ready, allow yourself to hope, dream, and begin creating a **new vision for the year ahead**.

We keep going. Together. 💛

12/24/2025

Join us in extending heartfelt wishes to the amazing NKH Crusaders President Holly Glass Burgess on her birthday!!

12/23/2025

A huge thank-you to Steve from Quieto Consulting Engineers for donating this incredible Bruins experience to support NKH Crusaders.

You can win TWO premium Boardroom tickets for the March 7 Bruins vs Capitals game — Ovechkin’s final season.

Only 100 chances. $25 each.
Enter here:
🔗 https://nkhcrusaders.app.neoncrm.com/campaigns/bruins-v-capitals-raffle

Every ticket pushes NKH research forward.

Step into the most exclusive seats in TD Garden and experience Bruins hockey like never before. We’re raffling off two premium tickets to the Boston Bruins vs Washington Capitals game on Saturday, March 7th at 12:30 PM — a milestone matchup as fans w

12/23/2025

12/19/2025

These are some of the BEST seats in TD Garden… and we’re only selling 150 chances.
Don’t wait. When they’re gone, they’re gone. The Winner will be drawn Monday Dec. 22

$25 per chance to win the Boardroom Bruins experience.
Enter now:
🔗

Step into the most exclusive seats in TD Garden and experience Bruins hockey like never before. We’re raffling off two premium tickets to the Boston Bruins vs Washington Capitals game on Saturday, March 7th at 12:30 PM — a milestone matchup as fans w