NKH Crusaders

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NKH Crusaders NKH Crusaders, established in 2010, is committed to advancing research and supporting the people and caregivers affected by Nonketotic Hyperglycinemia, NKH.

We hope to bring awareness about NKH as well as raise funds for needed research. We need more treatment options.

Who Cares for the Caregiver? ❤️Great show today on being a caregiver on the Tamaron Hall show :  we need to bring more o...
10/16/2026

Who Cares for the Caregiver? ❤️

Great show today on being a caregiver on the Tamaron Hall show : we need to bring more of this to light on what living a caregiver life means:

https://tamronhallshow.com/episodes/10-16-26/

Who Cares for the Caregiver? ❤️

What does it mean to live a life as a caregiver?

Imagine being the parent of a child with a rare, complex medical condition like **NKH (nonketotic hyperglycinemia)**, or a parent watching their child battle cancer. Imagine being a daughter caring for an aging parent with cancer or Alzheimer’s disease.

Different circumstances, but often a shared reality: love, fear, anxiety, exhaustion, grief, and the constant responsibility of caring for someone you love.

Caregiving can become a full-time emotional and physical commitment. You learn medical terminology, navigate appointments, advocate for your loved one, and make difficult decisions, all while trying to hold your family and yourself together.

And yet, one of the most difficult parts of caregiving is often the part we talk about the least,
The guilt of feeling exhausted by the very person you love so deeply. The guilt of needing a break. The guilt of asking for help one more time.

There is also the guilt of feeling that your family is always in need. Another favor, another request, another moment when you have to depend on someone else.

You begin to worry about being a burden. You hesitate to ask for support. You stop sharing how difficult things really are because you don't want people to feel sorry for you or become tired of hearing your story.

So, when someone asks, “How are you?” you say, “We're fine.”

But sometimes, you're not fine. You're simply doing what needs to be done because someone you love depends on you.

Who cares for the caregiver?

Who checks on the parent caring for a child with NKH, navigating complex medical needs and an uncertain future? Who supports the parents sitting beside their child through cancer treatments, trying to remain strong when they are frightened themselves? Who is there for the daughter caring for a parent with cancer or watching Alzheimer's slowly change someone she has loved her entire life?

And who is there months or years after the diagnosis, when the initial offers of help fade, but the caregiving never stops?

We need to recognize that caregivers are people, too. They experience anxiety, isolation, anticipatory grief, and burnout. Their own health, relationships, and emotional well-being can quietly take a back seat to someone else's needs.

We often praise caregivers for being strong, selfless, and resilient. But sometimes, that praise reinforces the expectation that they should be able to handle everything alone.

We must STOP confusing strength with having to do everything alone. You don’t need to do it alone !!

So how do we remove the stigma around asking for help?

We start by offering more than the familiar words, “Let me know if you need anything.”

We bring dinner. We offer to sit with a loved one so a caregiver can rest. We check in weeks, months, and years later. We ask, “How are YOU doing?” and make room for an honest answer.

We listen without judgment. We create spaces where caregivers can admit they are struggling without feeling that it diminishes their love or their ability to care, or that they have to apologize for struggling. Caregivers often don’t have time to process the life they are walking , they are too busy keeping it moving .

A parent can love their child fiercely and still need respite. A daughter can love her parent deeply and still feel overwhelmed. A family can be resilient and still need help.

Both things can be true.

Caregivers should not have to reach a breaking point before they are worthy of care themselves.

The measure of a compassionate society is not only how we care for those who are ill, but also how we care for those who care for them.

Perhaps it is time to move beyond admiring caregivers for how much they can endure and start asking how we can help lighten their load.

Because no one should have to choose between being a good caregiver and being cared for themselves.

And no caregiver should ever have to feel like a burden for needing support.

Let's change the conversation. Let's make asking for help a sign of humanity, not weakness. And let's remember to care for the caregiver.❤️

💜Kristin💜

Caregiving: A New Diagnosis?

HUGE Thank You to our presenting sponsor for our 2027 Faces of NKH Calendar! 🎉Prime Time Sports & Framing🎉https://primet...
10/14/2026

HUGE Thank You to our presenting sponsor for our 2027 Faces of NKH Calendar!
🎉Prime Time Sports & Framing🎉

https://primetime12.com

Check out their website for not only all of your framing needs, but those special holiday gifts you are looking to purchase!

Great News! Emily Ross, LPC will be continuing her presentation on Connected Parenting. Parenting a child with Nonketoti...
10/09/2026

Great News! Emily Ross, LPC will be continuing her presentation on Connected Parenting.

Parenting a child with Nonketotic Hyperglycinemia means carrying responsibilities most people never see. Medications, feeding schedules, seizures, appointments, equipment, insurance, advocacy, and constant decision-making become part of everyday life—alongside all of the ordinary responsibilities of being a parent.

For this special Rare Connections session, trauma-informed therapist Emily Ross will lead an interactive conversation focused specifically on the experience of parenting a child with NKH and navigating medical complexity.

Together, we’ll talk about the emotional and mental load that can come with caregiving—including uncertainty, hypervigilance, exhaustion, grief, guilt, isolation, and the pressure to always be prepared for what comes next.

🗓️ This Thursday, October 15 at 7:00 PM EST

🔗 Click the Register and get a link to the Zoom meeting.

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

💙 The 2027 Faces of NKH Calendar, presented by Prime Time Sports and Framing is officially on sale! 💛Meet the faces behi...
10/06/2026

💙 The 2027 Faces of NKH Calendar, presented by Prime Time Sports and Framing is officially on sale! 💛

Meet the faces behind our mission.

The 2027 Faces of NKH: Honoring Our Warriors Calendar features children and individuals from our NKH community throughout the year—putting real faces to an ultra-rare disease that far too few people know about.

Every calendar purchased helps NKH Crusaders continue our mission to fund research toward better treatments, advanced medical technologies, and ultimately a cure for Nonketotic Hyperglycinemia (NKH), while supporting the families navigating this devastating disease.

📅 Calendars are $25 each.

Buy one for your home or office, give one to a teacher, friend, coworker, or family member, or purchase several as meaningful gifts for employees and clients this holiday season.

Most importantly, when you hang this calendar on your wall, you’re helping us tell their stories and introduce more people to the incredible warriors at the heart of everything we do.

💙 To the NKH families who participated, pre-ordered, and shared your children’s beautiful photos with us, THANK YOU!! Thank you for trusting us to share their faces, celebrate their lives, and honor their stories. This calendar would not exist without you.

Now, we’re asking our entire community of supporters to help us get these faces onto walls everywhere.

🛒 Order your 2027 Faces of NKH Calendar today:
https://nkhcrusaders.app.neoncrm.com/giftstore/product?id=7

💛 Honor their lives. Help us fight for their future. 💙

🚨 TOMORROW IS THE DEADLINE! 💙💛NKH families, there’s just ONE DAY LEFT to make sure your warrior is included in the 2027 ...
10/04/2026

🚨 TOMORROW IS THE DEADLINE! 💙💛

NKH families, there’s just ONE DAY LEFT to make sure your warrior is included in the 2027 Faces of NKH: Honoring Our Warriors Calendar!

📅 Deadline: October 5th

To have your child featured, you must pre-order your calendar AND submit your child’s photo and information by tomorrow.

💙 First child: $25 — includes one calendar
💛 Additional children with NKH: $10 each — includes an additional calendar for each child

Once you pre-order, check your emailed receipt for the link to the family submission form. Don’t forget, your submission isn’t complete until we have your child’s photo and information!

Every face in this calendar helps tell the story of NKH. We want to see as many of our warriors represented as possible, celebrating those who are with us and honoring those we forever carry with us. 💙💛

Don’t miss the deadline!

👉 Pre-order here: https://nkhcrusaders.app.neoncrm.com/giftstore/product?id=1

📸 Pre-order + photo submission deadline: October 5th

🎉🎂 Happy Birthday to our amazing NKH Crusaders Director of Operations and my dear friend, Heidi Leslie💙Thank you for eve...
10/03/2026

🎉🎂 Happy Birthday to our amazing NKH Crusaders Director of Operations and my dear friend, Heidi Leslie💙
Thank you for everything you do for NKH Crusaders and for all of our families each and every day. Your dedication, compassion, and commitment mean more than words can express. You work tirelessly to support, advocate for, and bring hope to so many families in the NKH community.

We are so incredibly grateful for YOU and all that you do! 💙

Wishing you a very Happy Birthday, Heidi! May your day be filled with all the love, happiness, and appreciation you deserve! 🎂🎉💐

Happy Birthday, my friend! 🥳💙

10/02/2026

Citizen Health is so much more than a registry! It’s a tool to help you as a rare disease caregiver. The mental load of Rare Disease caregiving is never ending. Using Ari and the Citizen Health platform can take some of that load off of you!

Register now, not just for the future of research, but for your own peace of mind.

https://www.citizen.health/ai-advocate/nkh-crusaders

✨ RARE CAREGIVER CRAFT NIGHT DEC 3rd! ✨Caregivers, we're setting aside the appointments, medications, paperwork, schedul...
10/01/2026

✨ RARE CAREGIVER CRAFT NIGHT DEC 3rd! ✨

Caregivers, we're setting aside the appointments, medications, paperwork, schedules, and never-ending to-do lists for one night of creativity, conversation & connection. 💙

Join Rare Connections virtually on December 3 as we create our own DIY Sea Glass Mosaics!

🎨 Choose your favorite design:

🌊
• Sea Turtle
• Seahorse
• Starfish
• Dolphin

🌻
• Bee
• Butterfly
• Decorative Flower (watering can)
• Sunflower

Your kit includes everything you need to create your mosaic, plus a mini wooden easel to display it when you're finished!

💵 Registration: $20

Your $20 covers the craft project AND shipping directly to your home.

📅 Craft Night: December 3
🚨 Registration Deadline: October 31
💻 Virtual — craft with us from home!

You'll choose your mosaic design when you register, so make sure you select your favorite!

And most importantly:
💙 This event is open to ALL rare disease caregivers. You do not need to be an NKH caregiver to join us.

No artistic experience required. No pressure to make something perfect. Just grab your favorite drink, get comfortable, and spend an evening creating and connecting with people who get it.

Come for the craft. Stay for the conversation and connection. ✨

Space is limited, and advance registration is required so we have enough time to order and ship each caregiver's kit.

🎉 AMAZON PRIME DAY IS OCTOBER 6TH & 7TH! 🎉 Wouldn’t you LOVE to have a $250 Amazon gift card to spend during Prime Day? ...
09/28/2026

🎉 AMAZON PRIME DAY IS OCTOBER 6TH & 7TH! 🎉

Wouldn’t you LOVE to have a $250 Amazon gift card to spend during Prime Day? 🛍️🎁 get those amazing deals !!

Get a jump-start on your Christmas shopping—or treat yourself!
Here’s your chance! ❤️
🎟️ $20 per spot
🎟️ Only 23 spots available!
⏰ Limited spots—don’t wait!
Not only could you win an AMAZING $250 prize, but you’ll also be supporting NKH Crusaders and our mission. Every spot helps us continue making a difference. 💙
Who wants a spot?! this will sell out quickly! 🎉

Click the link below to play ⬇️

Good luck, and thank you for supporting NKH Crusaders! 💙

Enter for a chance to win a $250 Amazon gift card just in time for Amazon Prime Days on October 6th and 7th! Your participation provides hope and practical…

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Boston, MA

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