Jack Urban and NKH Crusaders

CrossFit TILT Rowathon

Supporting Jack Urban, Non-ketotic Hyperglycinemia, and NKH Crusaders

When: Saturday, February 11th @ 8:00am
Gym doors open at 7:00am
*There will be no Saturday classes on this day
Where: TILT Sudbury – 31 Union Avenue
What: 42,195 Meter Row - Teams of 4 or 5
*Suggested $20 Donation

Jack Urban, a family friend of TILT Waltham member Joe Rioff, was born on June 13th, 2021 with Non-ketotic hyperglycinemia (NKH), a very rare disease which causes severe seizures and developmental delays, requiring 24/7 in-home care. One out of every 76,000 children have NKH.

With the high mortality rate, there are barely 500 known active cases in the world, and due to the rarity of this disease, NKH research is funded solely by families and friends from those impacted. It is an orphaned disease – no funding from pharmaceutical companies or government grants. All donations made for this event will go towards the NKH Crusaders, a 501(c)(3) nonprofit organization that has partnered with the University of Notre Dame’s Boler Pargesian Center for Rare and Neglected Diseases.

The message from the world’s leading doctors is clear:
The science for a cure is there, but the funding is not.

At a friends and family event earlier in the year, Jack’s father Joe shared some of what the family has been going through. It’s hard to hear, but inspiring.

A little over a year ago an army of doctors walked into our hospital room.
Jack was just 2.5 months old and was hooked up to what seemed like every machine at Children’s Hospital. He had just had a 40-minute seizure and the doctors were reattaching electrodes to his head to monitor brain activity. Jack didn’t fight - he was too tired from being carted to a brain MRI, to a spinal tap, to meeting more doctors than many of us will ever meet.
After 56 hours of testing, there was a diagnosis. Non-ketotic Hyperglycinemia. NKH.

My wife Molly and I sat there and cried, the disease was on our radar and it was the worst case scenario. We did exactly what the doctors told us not to do, but exactly what anyone impacted would do - we googled it. And it’s terrible.

I don’t know how long I sat in that room, staring at my son, until I had to muster the courage to ask a question that no parent should ever ask - is my son going to die?
One doctor, he looked at me and said “well everyone dies, but this is a matter of when.”
Science says Jack won’t crawl. Won’t stand. Won’t walk. Won’t run. Won’t talk. Won’t eat. Won’t laugh. Won’t live.

I will not accept any predetermined fate for my son. Molly won’t. Jack won’t. And you’re all here to help us fight.

So what do we do when statistics and science aren’t in our favor?
We change them.

Straight from the lips of the world’s leading expert on the disease to your ears -
The science to cure NKH is there, but the funding is not.

Every dollar we raise is going directly to the team at Notre Dame to ensure we’re doing everything we can to find a cure during Jack’s life. This is how we change the stats. This is how we change the odds. We can change the science. And we can save Jack’s life.


Brian Sieber
Sudbury, MA

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