NKH Crusaders

06/06/2026

🐝 Bee Involved with NKH Crusaders! 🐝

Have you ever wondered how you can make a difference for the NKH community? Join us on Monday, June 15 at 7:30 PM ET for our Bee Involved Virtual Information Meeting!

We'll share updates on NKH Crusaders' current budget and funding needs, explain the many volunteer opportunities available, and introduce our Peer-to-Peer Fundraising Program:

what it is
why it matters and
how you can get involved.

Every volunteer, fundraiser, advocate, and supporter helps us move research forward and strengthen support for families affected by NKH.

Register today and come learn how you can bee part of the impact. 💙💛
🔗 https://nkhcrusaders.app.neoncrm.com/forms/volunteer-information-meeting

Join NKH Crusaders on Monday, June 15 at 7:30 p.m. Eastern Time for an informational session about the future of our organization and the many ways supporters can help advance our mission. During this session, we will provide updates on the organization's current needs and priorities, discuss the gr...

06/05/2026

Every program we offer, every family we support, and every research initiative we fund begins with people who choose to get involved.

Join us on June 15 to learn how you can use your time, talents, and passion to help drive progress for the NKH community. Whether you have an hour a month or are looking for a larger role, there's a place for you to make a meaningful impact.

🐝 Bee involved. Bee the difference.

🔗 Registry link https://nkhcrusaders.app.neoncrm.com/forms/volunteer-information-meeting

06/05/2026

Since our April 6th launch we have more than 50 families enrolled in the Citizen Health registry.

Our Goal is 100 families, in 100 days! That means we have 40 days until July 15th, so we need your help to achieve our goal! Please share, enroll, or help a friend enroll! The process is so easy, just create an account and follow the prompts!

06/05/2026

NKH Crusaders is finally on Instagram! Can't wait to see you over there!

06/02/2026

Rare Connections Meeting today at 12:00 EST

Come how are you are, chat with people who get it.

You don’t have to walk this path alone

There’s still time to sign up

🔗 https://nkhcrusaders.app.neoncrm.com/forms/support-group

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. 💛