NKH Crusaders

05/29/2026

Asking for prayers for Thaddeus and his mom, He is in the ICU post surgery and having a difficult time. Please send prayers .

05/26/2026

We’re working toward a goal of 50 NKH families registered with Citizen Health by the end of May, and we need your help to get there.

Citizen Health is more than a patient registry. It gives families a secure place to organize medical records, better understand their child’s medical journey, and contribute real-world data that can help researchers better understand NKH and other neurodevelopmental conditions.

Your family’s experience matters. The daily realities, challenges, treatments, symptoms, therapies, and outcomes researchers don’t always see in clinical settings are exactly the kinds of insights that can help drive better care and future breakthroughs.

Families remain in control of their data at all times, and all information shared with researchers is de-identified and protected through HIPAA-compliant security measures.

We created a quick 6-minute onboarding video to walk you through the process step-by-step. If you’ve been considering joining, now is the perfect time.

🎥 Watch the onboarding tutorial + register here: https://www.citizen.health/ai-advocate/nkh-crusaders

Together, we can help build one of the strongest NKH patient registries in the world.

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

05/25/2026

One of the hardest parts of being a rare disease parent is living in the unknown.

With NKH, there are still so many questions and not nearly enough answers. When our children experience new symptoms, changes, or decline, we are often left wondering:
Is this progression of the disease?
Is something else happening?
Could this have been prevented?

And sometimes the truth is, even the doctors don’t know. Not because they don’t care, but because there simply is not enough research, not enough awareness, and not enough understanding of NKH.

As parents, we spend sleepless nights searching for answers, praying for guidance, and hoping someone will finally connect the dots for our child. We are forced to become researchers, advocates, and fighters while carrying unimaginable fear and anxiety every single day.

Nights are often the hardest. When the world gets quiet, the anxiety can grow louder. The “what ifs,” the fears, and the unanswered questions can feel overwhelming. So many rare disease parents lie awake carrying worries that most people will never fully understand.

What makes it even harder is when you feel something more is wrong — when your instincts as a parent tell you this may not just be NKH — but your concerns are dismissed or overlooked. Being unheard while your child suffers is one of the most helpless feelings in the world.

I wish I had the answers. I wish I could do more to ease the fear these moms and dads carry every day, all while I too walk around with my own anxiety, fears, and questions. Rare disease parents carry so much weight that most people never see.

For me, I turn to my faith. I truly do not know how I could walk this journey without it. I know faith looks different for everyone, but in my darkest and hardest moments, it is where I have to lean — because otherwise the fear and anxiety can feel consuming.

Rare disease families or any family should not have to beg to be heard. Our children deserve better. They deserve research, understanding, medical professionals willing to dig deeper, and a future filled with hope.

At NKH Crusaders, we will continue fighting for awareness, research, support, and answers so no family feels alone in this journey.

05/21/2026

Tonight at 8:00 PM EST, join us for Rare Connections, a virtual support group for caregivers of those living with rare and complex disorders.

No matter where you are in your journey, this is a space to connect with people who understand the realities of caregiving, advocacy, medical complexity, and the emotions that come with it all. Whether you want to share, ask questions, listen quietly, or simply be surrounded by people who “get it,” you are welcome here.

If you haven’t signed up yet, you can register here:
https://nkhcrusaders.app.neoncrm.com/forms/support-group

We hope to see you tonight.

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

05/16/2026

☕ Support the SCOPE NKH Discovery Study with Every Cup ☕
Do you drink coffee or tea?
Now you can enjoy your favorites while helping fund critical research for NKH.
Please support the NKH Crusaders and the Nora Jane Foundation through our Giving Bean Campaign!
🛍️ Shop for:
Fresh coffee
Coffee pods
Tea
Delivered right to your door
Every purchase helps raise funds for the SCOPE NKH Discovery Study and supports the fight against NKH.
Thank you for helping us make a difference — one cup at a time. 💜

Click the link below and hit enter store . You will see our benefit. Set up a subscription and save 🐝

05/15/2026

Since the conference, our community has turned passion into action in a big way.

Of our 7 family-run peer-to-peer fundraisers, 6 have been created since the conference, and just those 6 fundraisers alone have raised more than $10,000 in only a few short weeks.

This is what happens when a community refuses to sit still and wait for change.

We are beyond grateful to every family who heard the need and chose to take action in support of research, advocacy, caregiver support, and the future of the NKH community.

And it hasn’t stopped there.

We’ve had moms like Lisha Cooper launch creative fundraisers like a Little Caesars fundraiser benefiting the NKH Crusaders mission. We’ve had parents requesting meetings with us to brainstorming opportunities, and help them find ways to turn their voices into impact.

That matters.

Every fundraiser. Every conversation. Every connection. Every dollar raised. It all moves this mission forward.

To every family, friend, donor, and supporter who has stepped up recently: thank you for believing that together, we can build something bigger than ourselves.

If you’ve ever been interested in hosting a fundraiser, advocating locally, or getting more involved with NKH Crusaders, comment ACTION below. We would love to help you get started.

NKH Crusaders exists to serve families affected by Nonketotic Hyperglycinemia at every stage of their journey. From the moment of diagnosis through long-term care, families face complex medical decisions, financial strain, and emotional isolation tha

05/11/2026

Such a hard time in so many NKH families lives , so many kids in the ICU fighting for their lives while parents watch and feel so helpless. Please keep praying for Kane, Tyler , Charlotte , Knox and Zander.

05/10/2026

Happy Mother’s Day
To all the incredible NKH moms — and to the dads who lovingly carry the role of both mom and dad too — tomorrow is for you.

You may not always see your own strength, but I do. I see you rise on the days you feel like you can’t. I see you show up again and again with courage, determination, and unconditional love. I see the fierce way you advocate for your children, protect them, comfort them, and celebrate every victory, no matter how small. The love you give is unmatched, and your children are so lucky to have you.

Tomorrow, I hope you take a moment to celebrate yourselves and the incredible job you are doing every single day. Even in the exhaustion, even in the worry, even in the heartbreak — you continue to love with everything you have.

And to the moms whose children are now in heaven, we hold you especially close. May your babies send you extra signs of their love, gentle reminders they are near, and sweet butterfly kisses in your dreams. 🦋✨

Wishing all of you love, peace, strength, and moments of joy tomorrow. You are seen, appreciated, and deeply admired. 💙💛💙🐝