NKH Crusaders

03/18/2026

We are incredibly grateful to Coastal Heritage Bank for standing with us as a Bronze Level “Caregiver Warriors” Sponsor for the 2026 NKH Crusaders International Family Conference.

Their support helps bring families together from across the world—families who often feel isolated in their journey—to connect, learn, and find strength in one another.

Because of partners like Coastal Heritage Bank, we are able to continue funding research, supporting caregivers, and providing resources that truly make a difference.

Thank you for being part of this mission and for supporting our NKH community. 💙

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

03/12/2026

Please take note of these upcoming deadlines:

🏨 Hotel room block discount ends March 15
🎟 Conference ticket sales close March 15

After those dates, discounted rates and ticket availability will no longer be guaranteed.

If you’re planning to attend the 2026 Conference, we encourage you to secure your tickets soon.
👉 Purchase here:
https://nkhcrusaders.app.neoncrm.com/.../neonev.../events...

We can’t wait to be together in Boston.

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

03/10/2026

TIME SENSITIVE
NKH families if you are planning to attend the conference in April you must register by March 21, 2026 so I can plan for food. The hotel discount rooms block will close on March 15, 2026 if you have not booked your room please do so to secure the discounted rate.

Join the NKH Crusaders Family Conference for education, research updates, expert-led sessions, and meaningful connection for families impacted by NKH.

03/07/2026

Big shout out to my newest top fans! 💎

Luz M Quiles, Wanda Mcmichael, Luis Rojas, Erik De Gruyter, Kathy Arnold, Rochelle Smith Karber, Sandy Ann King, Mayra Udave, Donna Bozinovich

03/07/2026

Over the past several months, we’ve heard from a growing number of NKH families who are having to purchase and compound sodium benzoate themselves.

For many caregivers, this can feel overwhelming. Product labels include terms like USP, FCC, food grade, and laboratory grade, and it’s not always clear what those certifications actually mean or what you should be looking for when purchasing sodium benzoate.

To help families better understand these differences, we’ve created a guide explaining common sodium benzoate grades, certifications, and product documentation so caregivers can feel more confident reviewing suppliers and product information.

This guide is meant to provide education and clarity, not medical advice. Every child’s care plan should always be discussed with your medical team.

You can download the guide here:
https://www.nkhcrusaders.com/post/sodium-benzoate-grades-certifications-guide

If your family is currently preparing sodium benzoate at home, we hope this resource helps make the process a little easier to understand.

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

Our downloadable guide was created to explain the most common grades and certifications associated with sodium benzoate and what they indicate about testing, manufacturing standards, and product safety. For example, some certifications focus on pharmaceutical manufacturing practices, while others fo...

03/05/2026

Today my heart is incredibly heavy as share this update .

I keep seeing posts about bumblebees — the symbol our community has held onto through the years as a sign of hope but that is also shared when their is a loss. . Today we didn’t lose a bumblebee. Today we lost a little boy.
A beautiful, sweet little boy who was someone’s whole world. A little boy who filled his family’s life with love, laughter, and joy. A little boy who deserved so much more time, and who deserved research and treatments for NKH to be further along than they are today.

His family gave him the most incredible life. They loved him deeply, fiercely, and completely. No parents who love their child like that should ever have to face the unimaginable pain of saying goodbye.
NKH is cruel. It has no mercy. And today the weight of that reality feels overwhelming.
Those of us on this journey try so hard to hold onto the moments of joy and love with our children. We look for the small wins, the bright spots, the “bumblebees” that remind us to keep going. But days like today bring the fear, the anxiety, the anger, the sadness, and the grief crashing in all at once.
My heart breaks for his mom and dad as they begin the impossible task of learning how to navigate life without their sweet, amazing boy. It isn’t fair. None of this is fair.
But we have to keep fighting.
Holding this family in my heart tonight. 💛🐝

We love you always and forever Rhett and we are here Quinn💙💛💙🐝

03/04/2026

Last September, Kaylee received a specialized Tomato Chair through Ellie Kate’s Butterfly Wishes — and it changed her daily life.

In this video, her mom shares what that support truly meant for their family. Independence. Safety. Less stress. More freedom to simply live.

Now Kaylee’s family is giving back so that more children can receive essential equipment not covered by insurance — and so future needs can be met with hope instead of worry.

If her story moves you, consider standing with them.

Donate here to support Kaylee’s Butterfly Wishes fundraiser:
https://nkhcrusaders.app.neoncrm.com/campaigns/15/fundraiser/21

Together, we can make sure more families experience comfort, safety, and independence. 💛 🦋

03/03/2026

NKH Research Update: A Step Forward Newborn Screening

There is important movement happening in the newborn screening space — and NKH is part of the conversation.

The NIH-funded BEACONS pilot study is exploring whether genome sequencing can responsibly expand newborn screening across the United States. The project is led by Mass General Brigham and national collaborators, with the goal of identifying rare but medically actionable conditions earlier in life.

Out of 777 selected conditions, GLDC-mediated NKH has been included.

This is meaningful recognition for our community — and a potential step toward reducing the diagnostic odyssey for future families. NKH Crusaders is also actively advocating for inclusion of AMT-mediated NKH.

Early detection matters. Earlier intervention matters. Outcomes matter.

Read the full update here:
🔗 https://www.nkhcrusaders.com/post/nkh-research-update-newborn-screening

We will continue to push forward — for research, for visibility, and for every child who deserves a faster path to answers. 💙💛

We want to share an important newborn screening research development happening in the United States.

03/03/2026

Today’s the day.

Rare Connections meets at 12:00 PM EST.

Whether you stay the whole time or just listen quietly in the background, you are welcome.
🔗 https://nkhcrusaders.app.neoncrm.com/forms/support-group

Caregivers deserve support too.

We’ll see you soon.

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

03/03/2026

This is your gentle nudge.

Our next Rare Connections virtual support group meets:

🗓 Tuesday March 3
🕛 12:00 PM EST

If you’ve been feeling stretched thin…
If you’ve been needing someone who understands without a full explanation…
If you’ve been holding a lot in…

Come sit with us.
🔗 https://nkhcrusaders.app.neoncrm.com/forms/support-group

Virtual.
Moderated.
Confidential.

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

Two Online Meetings Monthly Join our community of devoted rare disease caregivers. Connect with others facing similar challenges to share resources and encouragement. Alone we are rare, together we are strong. Fill out the form to receive an email with the exclusive Zoom link for our monthly support...

03/02/2026

Rare Disease Collaboration Survey

The NKH Community has been invited to help support an important international initiative led by the patient organization Hrabriša - Lil' Brave One in collaboration with the iNTD network (International Working Group of Neurotransmitter-related disorders).

They have developed a global survey to collect patient-reported outcome measures (PROMs) for individuals and families affected by rare brain signaling-related disorders — including NKH.

🔗 You can complete the survey here:
https://www.proms-ntd.org/

Why might you consider participating?
Often, rare disease research focuses on lab values and clinical endpoints — but not enough on the real, day-to-day lived experience of patients and caregivers.

The goal of the survey is to find work together across related rare diseases to find commonalities in what matters to patients and present this to researchers and clinicians

The questionnaire is available for both patients and caregivers and has been translated into multiple languages (English, Chinese, German, Greek, Spanish, French, Italian, Serbian, and Turkish).

The stronger our participation, the stronger our visibility in international research discussions. If you have the time and emotional bandwidth, please consider filling it out and sharing it with other NKH families.

Every response helps.

Thank you for participation in the Neurotransmitter related disorders PROMS questionnaire. We want to better understand the experience of patients, families and care-givers face with neurotransmitter-related disorders. Through your involvement in this PROMS questionnaire, you will be able to directl...