NKH Crusaders

04/07/2026

Volunteer Opportunity: Committee Lead – Ellie Kate Butterfly Wishes Program

NKH Crusaders is currently seeking a passionate and dedicated volunteer to step into the role of Committee Lead for our Ellie Kate Butterfly Wishes Program.

Due to personal commitments, our current committee lead has resigned, creating an important opportunity for someone to champion this meaningful program. The Ellie Kate Butterfly Wishes Program plays a vital role in supporting NKH families, and we are looking for someone who is excited to help it continue to grow and thrive.

About the Role:
As Committee Lead, you will help guide and coordinate efforts to deliver thoughtful support and meaningful experiences to NKH families. You’ll collaborate with a caring team of volunteers and leadership to make a direct impact in our community.

Time Commitment:

Approximately 8-10 hours per month, scheduled flexibly around your availability
One evening meeting per month (required)

Support & Training:

Training with our existing process and ongoing support will be provided to help you feel confident and successful in the role
Fundraising guidance and support will also be available

We’re Looking For Someone Who Is:

Compassionate and motivated to support NKH families
Organized and comfortable coordinating small initiatives
Comfortable using email, basic computer tools, and Excel
A team player with a willingness to lead and communicate
A person with passion and courage to bring unique ideas

This is a wonderful opportunity to make a meaningful difference while working alongside a supportive and passionate mission driven community.

If you’re interested in learning more or stepping into this role, we’d love to hear from you! Please email Kristin@nkhcrusaders.com by April 21, 2026.

04/07/2026

Join us this month for connection, encouragement, and a space where you don’t have to explain your journey to be understood.

Today at 12:00 PM EST

Whether you come to share or just listen, you are always welcome here.

Join us: https://www.nkhcrusaders.com/support-group

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

Join the NKH Crusaders support group to connect with families and caregivers affected by Non-Ketotic Hyperglycinemia, and other rare diseases. Share experiences, find encouragement, and build a network of support in a compassionate community.

04/04/2026

Good afternoon ,

The new Citizen Health patient registry is a powerful step forward for NKH Crusaders families and researchers. It allows you to securely share your Write me 1 min speech on the benefits of the new patient registry platform for NKH Crusaders and how this will help researchercomplete medical record in just a few short moments during sign-up, creating a centralized, meaningful resource. This helps researchers better understand NKH, identify patterns, and accelerate progress toward treatments. Every patient’s story contributes to real, actionable insights.

To learn more, join our Monday information sessions by clicking the link below to register. Even if you can’t attend live, we encourage you to sign up so we can send you the recorded session.

Together, we can turn shared data into progress and hope.

Thank you.

We are excited to partner with Citizen Health to give our community powerful new tools to navigate complex medical care while helping accelerate rare disease research. This partnership brings families three critical resources: centralized medical records from all providers in one secure place, a per...

04/03/2026

Don’t miss the upcoming kickoff webinar with Citizen Health.

We’ll walk through how this partnership can help you better manage care and contribute to NKH research.

Can’t make it live? No problem. The webinar will be recorded.

You must register to receive the recording.

Secure your spot here: https://nkhcrusaders.app.neoncrm.com/forms/citizen-health-webinar

04/02/2026

We’re looking for a dedicated volunteer to step into a leadership role within NKH Crusaders and help guide our Ellie Kate’s Butterfly Wishes program.

As Committee Lead, you’ll work alongside a passionate team to coordinate efforts that provide meaningful support to NKH families. This role requires about 8–10 hours per month, includes one monthly evening meeting, and comes with full training and ongoing support.

We’re looking for someone who is compassionate, organized, comfortable with basic tools like email and Excel, and ready to bring ideas to life while leading with purpose.

If you’re ready to make a direct impact in the NKH community, we’d love to connect. Reach out to Kristin@nkhcrusaders.com

04/01/2026

We are honored to welcome Caitlin Clark and her dad, Todd, as NKH Crusaders Raffles volunteers.

They will be supporting our raffle efforts by sourcing items, managing page communications, and helping coordinate posts. Through this work, they are actively creating new opportunities to raise funds, strengthen support for families, and advance NKH research. Their contributions play a direct role in moving our mission forward—bringing hope, resources, and meaningful progress to the NKH community.

“Hi everyone, my name is Caitlin. I am a 25-year-old single mom to my beautiful daughter, Braylynn, who lives with severe NKH. Throughout our journey, I have developed a deep passion for supporting others in the NKH community and raising awareness. I am dedicated to helping fund research and improve the lives of families affected by NKH. I am always looking for meaningful ways to give back, and I am so incredibly excited and honored to be part of a team working toward hope, support, and progress.”

Please join us in welcoming Caitlin and Todd. 💙💛

04/01/2026

We are excited to partner with Citizen Health to bring our community powerful new tools to navigate complex medical care while helping accelerate rare disease research.
Through this partnership, families will have access to three critical resources:

• Centralized medical records from all providers in one secure place
• A personal AI Health Advocate that can instantly answer questions about your child’s medical journey
• The opportunity to contribute to groundbreaking research that could bring us closer to life-changing treatments

This is about more than convenience. It’s about building better care management today while driving the research breakthroughs of tomorrow.
We encourage every family to be part of this.
Register for the kickoff webinar on Monday, April 6 at 3:30 PM EST.

This call will be recorded if you’re unable to join. Register and we will send you the recording
Click here to register >> https://nkhcrusaders.app.neoncrm.com/forms/citizen-health-webinar

04/01/2026

April is almost here, and so are our Rare Connections support group meetings 💙

Join us this month for connection, encouragement, and a space where you don’t have to explain your journey to be understood.

🗓 First Tuesday Meeting
April 7 at 12:00 PM EST

🗓 Evening Meeting (Adjusted Date)
Thursday, April 23 at 8:00 PM EST
(Note: This month’s evening session is moved to the fourth Thursday due to the NKH Crusaders Conference.)

Whether you come to share or just listen, you are always welcome here.

Join us: https://www.nkhcrusaders.com/support-group

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

Join the NKH Crusaders support group to connect with families and caregivers affected by Non-Ketotic Hyperglycinemia, and other rare diseases. Share experiences, find encouragement, and build a network of support in a compassionate community.

03/31/2026

We are excited to partner with Citizen Health to bring our community powerful new tools to navigate complex medical care while helping accelerate rare disease research.

Through this partnership, families will have access to three critical resources:

• Centralized medical records from all providers in one secure place
• A personal AI Health Advocate that can instantly answer questions about your child’s medical journey
• The opportunity to contribute to groundbreaking research that could bring us closer to life-changing treatments

This is about more than convenience. It’s about building better care management today while driving the research breakthroughs of tomorrow.

We encourage every family to be part of this.

Register for the kickoff webinar on Monday, April 6 at 3:30 PM EST.
This call will be recorded if you’re unable to join.

Click here to register >> https://nkhcrusaders.app.neoncrm.com/forms/citizen-health-webinar

03/22/2026

We are deeply honored to recognize Jeanne Carras as the Title Sponsor of the 2026 NKH Crusaders International Family Conference.

This level of support is more than sponsorship. It is leadership, belief, and a powerful commitment to the NKH community.

Because of Jeanne’s generosity, we are able to bring together families, caregivers, and leading researchers to drive progress, share knowledge, and build lasting connections that change lives.

Her support fuels our mission to drive research toward better treatments, advanced medical technologies, and ultimately a cure, while continuing to provide hope and support to families along the way.

From the bottom of our hearts, thank you for making this possible. 💙

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

03/22/2026

We are proud to recognize Exelon as a Bronze Level “Caregiver Warriors” Sponsor for the 2026 NKH Crusaders International Family Conference.

Your support directly impacts families affected by NKH by helping us provide meaningful connection, education, and support during one of the most important gatherings of the year.

Thank you for standing with our community and helping move our mission forward.

We are truly grateful. 💙

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