NKH Crusaders

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. 💙💛💙🐝

05/09/2026

We have far too many of our NKH Children struggling with significant medical challenges right now. Please keep : Zander, Charlotte ,Tyler and Knox in your prayers. Pray for healing , knowledge for the doctors. As a parent it is so hard to see your child struggling.

05/08/2026

05/08/2026

For many years, NKH Crusaders has collaborated closely with the John Thomas Foundation and its President, Tom. They organize an annual golf tournament, providing support not only for NKH research but also for the basic needs of our children and assisting families during difficult times. Their golf tournament is approaching. You can contribute to their mission by sponsoring a hole in memory or honor of someone, or in your company's name. Please consider participating. To sponsor this event, click the link below.

Making a difference in the lives of those affected by NKH

05/07/2026

A huge thank you to the Thigpen family, Ed and Odelia, (Joycelyn's parents) for their incredible generosity and support of NKH Crusaders.

Through their donation of multiple raffle and auction items at this year’s conference and benefit events, they helped raise more than $2,000 to support NKH research, family programs, advocacy efforts, and community initiatives.

In addition to their fundraising support, they also donated several thoughtful items for families in our resource room, helping provide comfort, encouragement, and practical support directly to NKH families attending the conference.

Their kindness, generosity, and heart for this community continue to make a meaningful impact, and we are so grateful for the way they continue to show up for NKH families.

Thank you, Ed and Odelia, for helping us bring strength, dignity, and hope to the NKH community. 💙💛

05/06/2026

Ellie Kate’s Butterfly Wishes is more than a program. It is a promise to families walking through the realities of NKH and complex medical needs.

This NKH Crusaders initiative, supported by the John Thomas NKH Foundation, provides assistance for essential items that are often not covered by insurance. This can include medications, adaptive equipment, positioning chairs, bath seats, and other critical resources that improve quality of life and daily care.

At its core, Ellie Kate’s Butterfly Wishes exists to remove barriers. When families are already navigating so much, access to necessary equipment and support should not be another obstacle.

Applications are open year-round and each request is thoughtfully reviewed based on established guidelines. Requests must be directly related to the care and well-being of an individual with NKH, and items must fall within the scope of support the program provides.

Unlike some insurance options or other grant avenues, NKH Crusaders never asks for income verification. We believe that families should not have to prove income hardship to receive support for medically necessary items.

For memorial support, the process is intentionally simple. The only requirement is that the loved one had a confirmed NKH diagnosis. None of the other standard application guidelines apply in these cases, allowing families to receive support during an incredibly difficult time without added burden.

This program is built on dignity, trust, and a deep understanding of what this community faces every day.

If you are a family in need of support, or know someone who could benefit, you can learn more or apply here:
https://www.nkhcrusaders.com/ellie-kates-wishes

If you would like to help make wishes like these possible, you can support the program here:
https://nkhcrusaders.app.neoncrm.com/forms/ellie-kates-butterfly-wishes

Together, we are creating access, easing burdens, and making sure no family feels alone in what they are facing.

Benefitting Children and Families Affected by NKH Ellie Kate’s Butterfly Wishes, an NKH Crusaders initiative, provides hope and practical support to children and families facing Nonketotic Hyperglycinemia. Honoring the life and memory of Ellie Kate, we grant wishes for vital resources and everyday...