NKH Crusaders

04/24/2026

We want to hear from you.

If you attended the NKH Crusaders Conference, please take a few minutes to complete our post-event survey. Your feedback helps us improve future conferences and better serve NKH families around the world.

Take the survey here:
https://nkhcrusaders.wixforms.com/f/7452093922894939510

This survey is 100% anonymous. We do not collect any identifying information.

As a thank you, you can choose to enter a drawing for a $25 Amazon gift card. To enter, simply:

• Complete the survey
• Screenshot your confirmation message
• Email it to chancee@nkhcrusaders.com

Because responses are anonymous, this is the only way to enter the drawing.
Survey closes Saturday, May 23 at 11:59 PM (local time).

Thank you for helping us grow, improve, and continue moving the mission forward.

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

04/23/2026

Being a caregiver for someone with a rare disease is hard. You already know that. Every family’s experience looks different, but the weight of it is something we can carry together.

Whether you’re navigating seizures, complex care, broken systems, or quiet isolation, there is a place for you here.

You belong here.

Rare Connections is a space rooted in empathy, inclusion, and understanding, where you can share or simply listen, surrounded by people who get it.

🗓 Tonight, Thursday, April 23
🕗 8:00 PM EST

If you’ve been needing connection, this is your invitation to step in.

Sign up to receive the Zoom link: https://www.nkhcrusaders.com/support-group

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

04/22/2026

04/21/2026

Non Ketotic Hyperglycinemia (NKH) affects every family differently—but one thing is always the same: it is hard. NKH in all its forms—mild, attenuated, or severe—comes with challenges that most people will never fully understand.

While families may walk different paths, no path is easy. Those facing severe or attenuated NKH live with the realities of constant seizures, complex medical needs, and profound daily care. Those with milder forms may not face the same physical challenges, but their journey can be deeply isolating in its own way. Many parents have shared that they feel like they don’t quite belong—that they’re caught somewhere in between, unsure of where they fit.

That loneliness is real. And it matters.
As a community, we have the ability—and the responsibility—to do better for each other. We may not fully understand someone else’s experience, but we can choose empathy. We can choose kindness. We can chose to learn from one another experiences use them to help shape our own paths and a better community for all going forward . We can make space so that no one feels excluded or unseen.
At NKH Crusaders, our mission has always been to create a safe, inclusive space for ALL families—no matter where they fall on the spectrum of this disease. That means lifting each other up, not tearing each other down. It means ending the whispering, the side conversations, and the negativity. Words are powerful and whether you realize it or not the ones you speak about will hear it and it will hurt .

Focus on your family. Focus on how you can make a difference. Use your time and energy to support, uplift, and bring light into this community.
As founder and executive director, I am committed to protecting that space. Compassion, respect, and unity are not optional here—they are the foundation.
Let’s be better for each other. Always.

04/21/2026

Urgent prayers for Scarlett !! Please stop and pray.

04/20/2026

Last Friday night’s NKH Crusaders Benefit Dinner at The Tirrell Room was a powerful reminder of what this community can do when we come together.

With over 200 guests in attendance, we raised more than $40,000 to support the NKH Crusaders mission—driving research forward while continuing to provide critical support to families.

The evening was filled with great food, drinks, and connection, alongside:

50+ raffle items
A wide range of silent auction packages, including online auctions open through 04/27
A lively 50/50 raffle
Our crowd-favorite wine pull
A lottery ticket board
And a fun photo booth capturing the night

Most importantly, it was a night of community—bringing together NKH families and the Boston community to connect, celebrate, and push this mission forward together.

Thank you to everyone who showed up, gave generously, and made the night unforgettable.

04/20/2026

Last week, we had the privilege of bringing the NKH community together for a powerful and deeply meaningful conference experience, serving over 30 NKH families from across the world. Countries represented included the United States (including Puerto Rico), the United Kingdom, and Norway.

Day One focused on connection, education, and shared experience. Through 14 roundtable discussions, families learned about advocacy from Chancee Culp and Shannon Seymour, adulthood with NKH from Dorrie Carter, and the importance of physical therapy from Michelle Sarb. We explored feeding and speech therapy with Suzanne Ducharme, and gained insight into the NKH Crusaders SCOPE Project from Mackenzie Gamble.

Heidi Leslie shared ways to get involved with NKH Crusaders and join our volunteer efforts, while families had the opportunity to help leading researchers better understand how NKH impacts the entire family. We also heard from licensed therapist Emily Ross on trauma, grief, and healthy coping strategies. We also heard from our founder Kristin on why it is so important for families and communities to get involved to move research and family support forward .

We closed the day with our NKH Family Social Hour, hosted by Heidi Leslie, Chancee Culp, and Tom Swoboda. It was a space for families to relax, connect, and simply be together, filled with conversation, laughter, and a few fun raffle wins.

Day Two brought us deeper into the science and future of NKH research. We heard from leading experts including Dr. Nick Greene, Dr. Johan Van Hove, and Dr. Brian Shayota, along with The Jackson Laboratory, whose work developing NKH mouse models is critical to advancing research.

We ended the week with meaningful one-on-one family meetings with Dr. Van Hove and reiki sessions generously donated by Suzanne Ducharme.

The feedback we received, from both returning families and first-time attendees, was overwhelmingly positive. The breakout sessions created space for real conversation, deeper understanding, and genuine connection. Families valued the opportunity to engage directly with researchers and specialists in a more personal and impactful way.

We are honored to serve this community and remain committed to growing, improving, and expanding this experience in the future as we continue driving research, support, and hope forward.

04/17/2026

Our Silent Auction is officially live, and every item tells a story of generosity, purpose, and impact.

From handcrafted pieces to exclusive experiences, each donation has been thoughtfully given to help drive something bigger than all of us. Every bid placed goes directly toward advancing research, supporting families, and providing critical resources for those affected by Nonketotic Hyperglycinemia (NKH).

This is more than an auction. It’s an opportunity to turn everyday items into real progress. To take something you love and use it to help change lives.

Browse the items. Place a bid. Share with others.

Together, we are moving the mission forward.

Welcome to the NKH Crusaders Silent AuctionEvery bid you place fuels progress.Your participation directly supports life-changing research, critical family support, and accessible education for those impacted by Nonketotic Hyperglycinemia (NKH). This rare and devastating disorder affects children and...

04/16/2026

Tomorrow day 2 of the conference is not at the Masonic Lodge in weymouth. It will be at the Braintree Hyatt where it was today !!!

04/15/2026