Team 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...
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Team Jack
- Mar 20
- 3 min
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 8
- 2 min
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 30
- 3 min
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 11
- 3 min
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 2
- 2 min
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, 2023
- 1 min
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, 2023
- 2 min
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, 2023
- 2 min
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, 2023
- 2 min
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, 2023
- 1 min
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, 2023
- 1 min
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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