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  • Writer's pictureTeam Jack

2024 NKH Conference

Earlier this month, Molly and Aunt Katie attended the annual NKH Conference hosted by the NKH Crusaders. This was our 2nd time attending since Jack was diagnosed in 2021. We will be the first to admit that we are extremely spoiled compared to other families - most travel a considerable distance to attend the conference, from California to Europe and in between - our commutes from Norwell and just down the street in Weymouth were MUCH shorter.

The event featured many speakers, ranging from scientists with emerging ideas, established NKH researchers with updates about their ongoing research and doctors and therapists with recommendations for the management of NKH. While much of what they shared will remain within the 4 walls of the conference hall, we are extremely grateful to all of them for taking time to share their expertise with us. A big shout out to some of Jack’s specialists for sharing their time- we were very proud to see members of Team Jack at the conference and it further strengthened our confidence that Jack is receiving the best care possible.

While the speakers offered incredibly beneficial information and stretched our knowledge (for example - did you know that we share 75% of our DNA with zebrafish?), the greatest benefit of the conference is definitely the personal connections. While we typically see our NKH community on large Zoom calls or social media there is a notable difference in meeting families facing the same challenges, sharing the same fears and joys, and fighting for the same cause, in-person.

While Jack did not join us this year, there were several children at the conference. It can feel so isolating navigating this world with a child with a rare disease, so being in a room full of people who “get it” was refreshing. Medication reminder alarms went off throughout the day, some enjoyed lunch orally while others relied on their G-tubes, and wheelchairs were steered with the same confidence as strollers. None of this was strange, none of this was out of place or caused stares, none of this was seen as anything but our community’s normal. Participation from the audience grew emotional at times and, instead of feeling like it was falling on ears that could never understand, it was met with reassuring nods and murmurs of agreement from families feeling the exact same way.

As we move on from this year’s NKH conference, we do so feeling more informed, reenergized and connected to our NKH community. We leave with hope, confidence and extreme gratitude. We are excited to work together with our whole community throughout the month of May to move research forward so our kids have better therapeutic options and, one day, a CURE—stay tuned for more information about May’s event in the coming days.

Thank you to the NKH Crusaders for another great conference, until next year!

Here are some recent pics of Jack for a little dose of JOY.

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