NKH Crusaders

09/03/2026

Good Morning🌞

💰Only 20 spots left for our Raining Cash September Raffle!
🎟️Get your $15 tickets today!

🎉Drawing when sold out or on Wednesday September 9th, whichever comes first!🎉

Don’t miss an opportunity to fill your pockets with 💵

Enter the NKH Crusader's "It's Raining Cash Monthly Raffle 2026 💸Every ticket you purchase helps fund NKH research, family resources, and awareness for…

09/03/2026

It’s Raining Cash 💰 is up and running!

This raffle will close on September 9th or before so get you tickets today!!

Tickets: $15.00 a piece! To win $250!!

🎉Thanks to all that have participated thus far! Only 24 spots remaining

Enter the NKH Crusader's "It's Raining Cash Monthly Raffle 2026 💸Every ticket you purchase helps fund NKH research, family resources, and awareness for…

09/02/2026

Celebrate the season while making a meaningful difference for families affected by Nonketotic Hyperglycinemia (NKH).

For just $10, you'll be entered to win one of 30 exciting prizes, with a winner drawn every day throughout November. Even better, every winning ticket goes right back into the drawing, giving you multiple chances to win all month long!

Prizes include:
💵 Cash prizes up to $300
📺 65" Smart TV
🛍️ Amazon gift cards
👕 Gift cards to popular clothing retailers
🍽️ Restaurant gift cards
💧 HydroJug products
🥤 Stanley drinkware
🏎️ Formula 1 merchandise
🎁 And many more holiday-worthy surprises!

Whether you're shopping for yourself or crossing names off your holiday gift list, these prizes are perfect for the season.

Every ticket purchased helps NKH Crusaders advance critical research, provide essential caregiver support, and bring hope to families navigating one of the world's rarest neurological disorders.
30 days. 30 winners. Endless hope.

Want even more chances to win? Purchase multiple tickets! Every ticket gives you another opportunity to win one of 30 prizes while making an even greater impact for NKH families.

To purchase a ticket please reach out to an official volunteer, or send us a DM!

09/02/2026

We are thrilled to announce a brand-new way to contribute to NKH Crusaders and our mission to fund research and support families affected by Nonketotic Hyperglycinemia: Raffles on Zeffy!

While we will continue to share updates and opportunities on our official page, this new platform allows us to bring you regular, high-value raffle opportunities with 100% of proceeds going directly toward our mission. Thanks to Zeffy’s zero-fee platform for non-profits, every single dollar you spend on tickets directly impacts our fight against NKH.

What to Expect:
Cash Prizes: Regular cash giveaways to give back to our amazing supporters.

Hot & Trending Items: High-demand products, gift cards, and exclusive prize packages.

100% Impact: Zero processing fees mean maximum support for NKH research.

Our Very First Raffle Launches NOW

$250 Cash Raffle only 30 tickets sold at $15 a piece 🎉

We are kicking off this initiative with a bang!‼️

Prize: $250 Cash 💰

Launch Date: Live NOW

Where to Play: click the link below ⬇️

Don't miss your chance to win big while making a real difference. Thank you for your continued dedication, generosity, and support as an essential part of the NKH Crusaders community.

Enter the NKH Crusader's "It's Raining Cash Monthly Raffle 2026 💸Every ticket you purchase helps fund NKH research, family resources, and awareness for…

09/01/2026

🎉 WE DID IT — PHASE I IS FULLY FUNDED! 💙💛

Because of our incredible NKH community, Phase I of the Glycine Meter Project is officially FULLY FUNDED!

Thanks to families, friends, donors, and supporters who donated, shared, and rallied behind this project, the funds are now being sent to the biotech company so Phase I can officially begin!

This first phase will begin the work needed to determine the feasibility of developing a tool that could one day allow families to monitor glycine levels from home — a potentially transformative advancement for NKH care.

To every single person who helped make this possible: THANK YOU. You took an idea, believed in its potential, and helped turn it into action.

Phase I: FUNDED. ✅
Funding: On its way. 💰
Next step: Let’s get to work. 🔬

This is just the beginning, but today we celebrate a HUGE step forward for the NKH community.

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

08/28/2026

It truly takes a village to raise funds, support research, uplift our community, and sometimes, simply to survive. ❤️
It is such a huge honor to be named a finalist for the Mikaere Foundation. Elly, the founder, has worked tirelessly to raise awareness and support for NKH, even after experiencing the unimaginable loss of her own son.

The awareness, hope, and support this foundation brings to families is truly incredible. What an amazing accomplishment and such a well-deserved recognition.

Great job, Elly! 💙 NKH Crusaders thanks you for all that you do for the NKH community. Your dedication, strength, and tireless efforts continue to make such a meaningful difference. 🙏💙

08/28/2026

We work closely with the John Thomas NKH Foundation and they support so many NKH families and support research. If you want to attend or be a sponsor or have a raffle item to donate . Please reach out.

08/25/2026

To families contacting NKH Crusaders regarding the work of The Drake Rayden Foundation: Please be advised that over the years, NKH Crusaders has made multiple attempts to collaborate with and support their efforts. However, our core mission objectives do not align, as every research project we fund is designed to directly benefit every child and family within the NKH community.

We kindly ask that you direct all inquiries regarding their initiatives to their official communication channels. NKH Crusaders cannot speak to or advise on their projects, and we encourage all supporters to conduct independent research regarding how donations are allocated. We will not respond to direct messages concerning their fundraising or mission.

NKH Crusaders remains dedicated to advancing life-changing research. This year alone, we have committed substantial funding to critical global projects:
• University of Colorado: $149,000
• UMass (SCOPE Project): $97,000
• University College London (Dr. Nick Greene's AMT Project): $18,000

And Already funded by our generous NKH Community the glycine meter project for $10,000.


We are always happy to schedule a call with anyone who has questions and are fully prepared to share our grant documentation during those discussions.

08/20/2026

We're honored to welcome Emily Ross as the facilitator for our August evening Rare Connections Support Group.

Emily is a trauma-informed clinician, behavioral health leader, and clinical supervisor with extensive experience supporting children, families, and caregivers through life's most difficult seasons. She specializes in trauma-integrative care and is passionate about creating compassionate, supportive spaces where people feel heard, understood, and connected.

Whether you've attended Rare Connections before or this is your first meeting, you're welcome exactly as you are.

💙 Share if you'd like.
💛 Listen if that's what you need.
💙 Simply know you're not alone.

🕗 Tonight at 8:00 PM Eastern / 7:00 PM Central

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

We hope to see you this evening.

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

08/19/2026

The future of NKH treatment depends on our community’s participation.

As researchers work toward new treatments for NKH, including gene therapy, they need something incredibly important from us: data.

Citizen Health gives NKH families an opportunity to contribute their child’s genetic and clinical information to help researchers better understand the natural history of NKH. The more families who participate, the stronger and more useful that information becomes.

Dr. Nick Greene, NKH researcher at University College London, explains why:

“Genetic and clinical information on as many children as possible will be crucial for so called 'natural history studies' which aim to describe the clinical features of NKH, progression of disease and the variation in outcome between children. These studies are needed to be able evaluate new treatments - to see if they provide a benefit or not. Because of the variable progression of disease in different children the greater number of children in the registry will give the most accurate picture of NKH, the bigger the registry the better will be our ability to know if new treatments work.”

We need every NKH family who can participate to join us.

If you have already started your Citizen Health profile, please take the time to complete it. If you haven't joined yet, now is the time.

Every additional profile strengthens the NKH registry. Every family's information helps researchers build a clearer picture of this disease. And that foundation could be critical when it's time to evaluate the treatments we have all been waiting for.

💙 Join the registry and complete your Citizen Health profile today:
https://www.citizen.health/ai-advocate/nkh-crusaders

The bigger the registry, the better our ability to know if new treatments work.