Nora Jane Foundation

01/14/2026

In this heartfelt episode, we sit down with Shannon Seymour, a devoted mom to Luka, who lives with Nonketotic Hyperglycinemia (NKH)—a rare genetic disorder that causes a dangerous buildup of glycine in the body, leading to severe neurological challenges.

Shannon opens up about her family's raw and resilient journey: the overwhelming early days after Luka's birth, the long path to diagnosis, the daily realities of caring for a child with NKH, and where they stand today—with courage, love, and unwavering hope.

As one of the founding moms behind The Hive Podcast, Shannon and her fellow "rare moms" create a vital space for honest conversations about the highs, lows, and everything in between of raising children with NKH. Their mission? To support, connect, and remind every NKH family that they're not alone.

Whether you're navigating a rare diagnosis, supporting a loved one, or simply seeking stories of strength, this episode offers real talk, shared experiences, and a powerful reminder of community in the face of the unknown.

Tune in for inspiration, solidarity, and a deeper look at life with NKH. 💛

In this heartfelt episode, we sit down with Shannon Seymour, a devoted mom to Luka, who lives with Nonketotic Hyperglycinemia (NKH)—a rare genetic disorder t...

01/10/2026

01/09/2026

Amanda talks about the importance of finding a supportive community in rare disease.

01/08/2026

Chancee making the point that you need to speak up for your Child.

01/08/2026

Here is the updated list of names! Please share the raffle flyer so we can sell out and draw for our winner!

https://docs.google.com/spreadsheets/d/1Lpb1H3tQbjIp_PW2po9pKO6CxlJL69_UIdslwLonrIs/htmlview?fbclid=IwVERTSAPMhCpleHRuA2FlbQIxMABzcnRjBmFwcF9pZAwzNTA2ODU1MzE3MjgAAR59Cwww_SuxpaQvYMQuDinck7gFqqaCs5pv-yKwbnnipePy1Si4yAl6W-zF6A_aem_G6tkG7TtKpHn4MbcmXl3eA

🎄❄️ Winter Wonderland Travel Raffle ❄️🎄
Plan the ultimate getaway—and support NKH research while you do it!
🏆 Grand Prize Includes:
✨ One $5,000 gift card to your choice of:
Disney, Universal, Airbnb, Carnival Cruises, or Princess Cruises

✈️ One $1,000 gift card to Southwest Airlines or Delta Airlines, or take it as cash for a rental car

💵 Plus: $1,000 in spending cash

💰 Total prize value: $7,000
🎟 Tickets: $10 each — only 1,000 available!
Numbers are randomly assigned after purchase (you can't choose your own)

A Google sheet of names will be updated every 24–48 hours

Once all spots are sold, we’ll post the full list and announce the LIVE drawing date

Individual numbers will not be sent

📲 How to Enter:
Send your payment via Venmo to:
👉 (Nora Jane Foundation)
Please include “Trip” or ✈️ in the payment note.

🔒 IMPORTANT: Always verify the Venmo username before sending funds to protect yourself from scams. Nora Jane Foundation will not be liable for payment to scam accounts.

💙 All proceeds benefit NKH Research through the Nora Jane Foundation.
Where would you go if you won? ✈️ Drop your dream destination below!

01/02/2026

Episode 2 finally dropped!! Here is the description of the episode on Youtube.

Join us in this deeply moving interview with Chancee Culp, a devoted mother, fierce advocate, and Marketing Director for NKH Crusaders.

Chancee shares her personal journey through the challenges of Non-Ketotic Hyperglycinemia (NKH)—a rare genetic disorder affecting only about 500 children worldwide. Her unbreakable love, faith, and determination have fueled a powerful mission of hope and awareness.

Through her dedicated work with NKH Crusaders and support for organizations like the Nora Jane Foundation, Chancee fights tirelessly to fund groundbreaking research, provide vital support for families facing rare diseases, and push toward life-changing treatments.

In this video, hear Chancee's inspiring story of resilience, love without limits, and the profound strength that comes from turning pain into purpose. Her voice reminds us that no family should fight alone.
If this touches your heart, please like, share, and subscribe to spread awareness. Consider donating to the Nora Jane Foundation (norajanefoundation.com) or NKH Crusaders to help fund essential research and family support.

Together, we can bring hope to families battling NKH. 💙

Join us in this deeply moving interview with Chancee Culp, a devoted mother, fierce advocate, and Marketing Director for NKH Crusaders.Chancee shares her per...

12/31/2025

Amanda was told Nora would never have a quality of life. Nora would never laugh, never smile, never talk. Although there are things Nora may never do, she is proving doctors wrong. This is Nora laughing and smiling during speech therapy where she is learning to use buttons to communicate. Don't let them put your child into a neat little box. Let your child show you what they can do.

12/31/2025

It’s with sadness and respect that we share the news of another tragic loss in our community. A beautiful 15 year old child has died after courageously battling NKH. Please join us in praying for the family as they navigate their future ❤️🙏🐝🦋

12/21/2025

🎄❄️ Winter Wonderland Travel Raffle ❄️🎄
Plan the ultimate getaway—and support NKH research while you do it!
🏆 Grand Prize Includes:
✨ One $5,000 gift card to your choice of:
Disney, Universal, Airbnb, Carnival Cruises, or Princess Cruises

✈️ One $1,000 gift card to Southwest Airlines or Delta Airlines, or take it as cash for a rental car

💵 Plus: $1,000 in spending cash

💰 Total prize value: $7,000
🎟 Tickets: $10 each — only 1,000 available!
Numbers are randomly assigned after purchase (you can't choose your own)

A Google sheet of names will be updated every 24–48 hours

Once all spots are sold, we’ll post the full list and announce the LIVE drawing date

Individual numbers will not be sent

📲 How to Enter:
Send your payment via Venmo to:
👉 (Nora Jane Foundation)
Please include “Trip” or ✈️ in the payment note.

🔒 IMPORTANT: Always verify the Venmo username before sending funds to protect yourself from scams. Nora Jane Foundation will not be liable for payment to scam accounts.

💙 All proceeds benefit NKH Research through the Nora Jane Foundation.
Where would you go if you won? ✈️ Drop your dream destination below!

12/11/2025

❄️ Wow! You all are amazing! We have already sold 100 tickets in less than 24 hours for our Winter Wonderland Travel Raffle! ✈️ 🎄

Keep spreading the word! ☃️

12/09/2025

Thank you for all your support!!

12/08/2025

Excited to release our first Episode. I hope you all have a chance to listen. We would love to hear your feed back and suggestions for future episodes and any changes you would like to see.

In our very first episode, we sit down with Amanda Gray, co-founder of the Nora Jane Foundation and devoted mom to Nora Jane. Amanda courageously opens up ab...