NKH Crusaders

09/10/2026

💙 SPECIAL RARE CONNECTIONS SESSION 💛

Join us Thursday, September 17 at 7:00 PM ET, one hour before our regularly scheduled Rare Connections Support Group, for a special interactive session created specifically for NKH parents and caregivers.

Connected Parenting: A Trauma-Informed, Interactive Class for NKH Families
Led by Licensed Clinical Trauma Specialist Emily Ross

Parenting a child with NKH comes with a mental and emotional load that most people never see. Medications, feeding schedules, seizures, appointments, equipment, insurance, advocacy, and constant decision-making become part of everyday life—on top of simply being a parent.

During this interactive session, Emily will lead a conversation about navigating parenting, caregiving, and medical complexity, including:

💛 Managing overwhelm, exhaustion, and hyper-vigilance
💙 Coping with uncertainty, grief, guilt, and isolation
💛 Creating supportive routines when life is unpredictable
💙 Asking for help and practicing self-compassion
💛 Building resilience through the difficult days
💙 Strengthening connection with your child across different developmental and communication abilities
💛 Celebrating the wins that may look different in the NKH world but mean everything to our families

Come ready to participate as much—or as little—as you’d like. Ask questions, share your experiences, listen, or simply be present with other parents and caregivers who understand.

📅 Thursday, September 17
🕖 7:00 PM ET — Connected Parenting with Emily Ross
🕗 8:00 PM ET — Regular Rare Connections Support Group

⚠️ PLEASE NOTE: Connected Parenting is a separate event and will have its own Zoom link. You must register for the 7:00 PM session using the link below to receive the correct meeting information.

🔗 Register for Connected Parenting:
https://nkhcrusaders.app.neoncrm.com/nx/portal/neonevents/events?path=%2Fportal%2Fevents%2F56170

You are the expert on your child. You don’t have to navigate this journey alone.

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

09/08/2026

Join us for NKH Crusaders Rare Connections Rare Disease Caregiver Support group
1st Tuesday of each month at 12:00 PM EST
3rd Thursday of each month at 8:00 PM EST

🔗 https://www.nkhcrusaders.com/support-group

Words from our Founder:

There is tired...and then there is CAREGIVER tired. And they are absolutely NOT the same thing.

Physically tired is I need sleep. I worked too much. I didn't sit down all day. My body is tired and I need to rest.

Caregiver tired is something completely different.

It's your body being tired while your brain is still running through medications, appointments, supplies, feeds, treatments, seizures, equipment, insurance, paperwork, schedules and the 61 things you need to remember tomorrow.

It's finally sitting down...and immediately remembering someone needs repositioned.

It's getting everyone settled for the night and still listening for every cough, alarm, strange noise or change in breathing.

It's sleeping...but never REALLY turning off.

It's knowing exactly how much medication is left in a bottle without looking because you've already calculated whether you'll make it until the refill arrives.

It's being exhausted and still being the person everyone needs.

And I think that's the biggest difference.

Physical tired usually gets better with rest. Caregiver tired comes from carrying the responsibility of another human being 24 hours a day...even during the moments when you're technically resting.

And if you're a caregiver, you know EXACTLY the kind of tired I'm talking about. ❤️

09/08/2026

Only 9 tickets left! 🎉

$15 a ticket 🎟️ to win $250 Cash 💵

We will draw the winner tomorrow night!

Can’t win if you don’t play? 🎉 Click the link below ⬇️ to enter before they are gone!! 🎉

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

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

🎉🎉update! SOLD OUT!🎉🎉🎉
Drawing tomorrow night!

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.