From Stamps and Newsletters to New Beginnings: Why the NKH Crusaders International Family Conference Matters

When you have a child with Nonketotic hyperglycinemia, isolation becomes part of daily life. NKH is rare enough that most people I encounter have never heard of it, let alone understand what it means to live it every day. Friends and family try to relate, but the truth is they cannot fully grasp the weight of this diagnosis and, honestly, I am grateful they do not have to.

That is why the NKH Crusaders Conference matters so deeply.

There is something profoundly different about sitting in a room with parents and caregivers who do not need an explanation. They already know. They understand the seizures, the feeding tubes, the hospital stays, the endless questions with too few answers. They know the grief, the resilience, and the quiet strength it takes to keep going.

At the last conference in April 2024, I had the privilege of meeting parents who have been in the trenches of this disease for more than two decades. I met some of the mothers who created the very first NKH newsletters long before social media, online forums, or virtual support groups existed. These women bought stamps, envelopes, paper and printer-ink with their own money to share the minimal research updates and experimental treatment information with other families scattered across the country and the world. The newsletter was comprised of articles written by desperate parents, seeking connection.

A group of moms at the 2024 Fundraising Banquet. Moms who children range in age from 20 YO - 2 YO

They built community without Facebook groups, without Zoom calls, without instant communication.

They did not have a nonprofit to donate to. They did not have major universities actively pursuing better treatment options. They did not have a centralized place for hope.

In many ways, they had almost nothing but determination and love for their children.

As a "newer" parent and caregiver, I feel incredibly fortunate. Today, if I have a question, I can search online. If I cannot find the answer, I can ask hundreds of families through social media and often receive guidance the same day.

We have access to virtual support groups, including the NKH Crusaders Support Group, where caregivers can connect in real time with others who truly understand this journey. We have an established nonprofit advocating on behalf of our children. We have researchers listening.

That perspective stayed with me long after the conference ended.

2026 NKH Crusaders International Family Conference: A Conference Built on Knowledge, Connection, and Hope

The 2026 NKH Crusaders International Family Conference will take place April 15 and 16 and continues this legacy of connection and progress. These two days are designed specifically for families, caregivers, and advocates impacted by NKH.

The conference brings together NKH researchers, medical professionals, and rare disease experts alongside the families who live this reality every day. Attendees can expect educational presentations, meaningful discussions around current research, and opportunities to engage directly with experts who are committed to improving outcomes and standards of care for Nonketotic hyperglycinemia.

Equally important are the conversations that happen outside the sessions. The hallway talks. The shared meals. The moments where parents exchange practical advice, hard-earned wisdom, and encouragement that can only come from lived experience.

This is where knowledge meets humanity.

A Year of New Beginnings

This year truly feels like a turning point for our community.

NKH Crusaders has entered a new chapter with its newly established 501(c)(3) status, strengthening the organization’s ability to fund research, support families, and build long-term initiatives. New programs, including Ellie Kate’s Butterfly Wishes, have expanded the ways families can receive support beyond traditional assistance. The formation of a Medical Advisory Committee marks a significant step forward in guiding research priorities and ensuring collaboration with experts who understand the complexities of NKH.

These milestones did not happen overnight. They are the result of years of advocacy, perseverance, and the groundwork laid by the families who came before us.

A Night to Honor the Past and Invest in the Future

On Friday, April 17, the community will come together once more for the NKH Crusaders fundraising banquet, A Year of New Beginnings, held at the Tirrell Room in Quincy, Massachusetts. This evening serves as a meaningful conclusion to the conference week.

The banquet is more than a fundraiser. It is a moment to reflect on how far the NKH community has come and to commit, together, to where we are going. Funds raised support NKH Crusaders’ mission to drive research toward better treatments, advance medical technologies, and ultimately work toward a cure, while continuing to provide education, caregiver support, and essential resources for families.

It is a night rooted in gratitude for those who carried this community forward when hope felt scarce and optimism for what lies ahead.

From Then to Now

When I think about those early NKH newsletters and compare them to where we are today, the progress is undeniable. From handwritten letters to an international family conference. From isolation to connection. From uncertainty to coordinated research efforts.

We stand on the shoulders of parents and caregivers who refused to give up when the odds were overwhelming. Their work made it possible for today’s families to find each other, learn from each other, and advocate together.

This is what community looks like.

Alone we are rare. Together we are strong.

-Chancee Culp, Lucas' Mom, and NKH Crusaders Director of Marketing