Earlier this month, Molly and Aunt Katie attended the annual NKH Conference hosted by the NKH Crusaders. This was our 2nd time attending...

2023 was another busy year. In February our dear friend, Joe Rioff, and our new friends at TILT Crossfit hosted an incredible Rowathon to...

Bet you didn't know there's a Feeding Tube Awareness Week! We certainly didn't but we're so glad a week exists to raise awareness and...

Once a month from now until NKH Awareness Day (May 5th), we're going to shine a light on some of NKH's most burdensome symptoms, starting...

When we were putting together our presentation for the FDA, one of the things they wanted to learn from us was what a typical day with...

December 15, 2023 was a milestone day for NKH awareness and our work towards a cure. Along with a handful of other families, Team Jack...

Hi all, As you’ve seen from social media, Jack continues to dominate all aspects of physical therapy. His strength has improved ...

When someone you love gets diagnosed with a devastating illness, you cry, you try to process and then you ask "What can we do?". You...

It might be an overused phrase but that's only because it's so true. We always knew we'd have plenty of support when we became parents,...

When Jack was diagnosed with NKH, we were grateful for the speedy diagnosis but our hearts broke when the doctors explained what we could...

21 months with our Super Jack. 21 months living with NKH (well, minus the 2 months pre-diagnosis). 21 months of fighting back against...

To kick off the 2023 fundraising year, the CrossFit gym TILT dedicated their annual rowathon to Team Jack & The NKH Crusaders. Close...