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Team Jack
Apr 302 min read
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...
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Team Jack
Mar 203 min read
2023 in Review: A Recap of Last Year
2023 was another busy year. In February our dear friend, Joe Rioff, and our new friends at TILT Crossfit hosted an incredible Rowathon to...
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Team Jack
Feb 82 min read
Feeding Tube Awareness Week
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...
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Team Jack
Jan 303 min read
The Symptoms of NKH: Seizures
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...
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Team Jack
Jan 113 min read
A Day in the Life
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...
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Team Jack
Jan 22 min read
Our Meeting with the FDA
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...
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Team Jack
Oct 31, 20231 min read
Jack Urban: We Will Win
Hi all, As you’ve seen from social media, Jack continues to dominate all aspects of physical therapy. His strength has improved ...
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Team Jack
Apr 27, 20232 min read
Thank You
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...
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Team Jack
Apr 18, 20232 min read
It Takes a Village
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,...
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Team Jack
Mar 30, 20232 min read
The Power of Yet
When Jack was diagnosed with NKH, we were grateful for the speedy diagnosis but our hearts broke when the doctors explained what we could...
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Team Jack
Mar 13, 20231 min read
21 Months With NKH
21 months with our Super Jack. 21 months living with NKH (well, minus the 2 months pre-diagnosis). 21 months of fighting back against...
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Team Jack
Mar 13, 20231 min read
CrossFit for a Cause
To kick off the 2023 fundraising year, the CrossFit gym TILT dedicated their annual rowathon to Team Jack & The NKH Crusaders. Close...
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