2023 in Review

2023 was another busy year.

 

In February our dear friend, Joe Rioff, and our new friends at TILT Crossfit hosted an incredible Rowathon to benefit NKH. The event brought together a lot of old Crossfit friends who we haven't seen since the pandemic; it was fun and insanely successful. Over $30,000 was raised for NKH research. We cannot thank Joe and the TILT family enough.

 

In March, Jack's CT family teamed up with family friends from Team Tate to host a St. Patty's themed fundraiser. It was a fun night out for all and another success. Nearly $10,000 was raised for NKH research thanks to Bobby, Grandad, Aunt Jesse and the Team Tate crew.

 

The Rowathon and CT events gave us the opportunity to not only raise funds for NKH research but also spread more awareness for NKH to so many new people.

 

The Jack Richard Urban Foundation became an OFFICIAL 501(c)(3) non-profit in March thanks to the efforts of Sean Higgins and in April we were a part of another amazing Notre Dame Day. Thanks to all our friends and family (and their friends and family), our NKH community came in first overall!

 

As most people know, Jack spent almost a month in the hospital last summer due to complications from the keto diet so the summer months were spent getting our guy better and getting used to his new G-tube. Jack continues to fight NKH with unimaginable strength and resilience and we are happy to share he has, indeed, bounced back and then some.

 

In the fall we were invited by the NKH Crusaders to join seven other NKH families in presenting to the FDA in a Patient Listening Session. This was an amazing opportunity but a lot of work for all involved. Aunt Katie was a huge help in putting together a killer presentation. Joe did a phenomenal job representing our family and telling Jack’s story. The Listening Session was held on December 15th and went very well. We received positive feedback from the FDA and will have a summary of the session available to share later this year.

 

Between our fundraisers, ND Day and the continued generosity of our community we raised a total of $156,000 for NKH research in 2023. A truly incredible amount that will get us one step closer to a cure for NKH.

 

I’m sure you’re wondering, but what about the research?

 

Exciting NKH research continues at both Notre Dame and the University of Colorado. The team at the University of Colorado continues to work on a therapeutic molecule to manage glycine levels, which would replace the dreaded Sodium Benzoate that Jack takes every 6 hours. While the team at Notre Dame continues their work on gene therapy. A provisional patent for GLDC gene therapy was filed by Notre Dame in the fall and we are VERY happy to report that, although, the first colony of AMT mice did not survive, the second colony has! The second colony is viable and will hopefully be ready for the team to begin gene therapy research in the coming months.

 

For anyone new here...NKH has two primary genetic mutations; 80% of patients have the GLDC mutation while 20% have the AMT mutation. Jack has the AMT mutation and in 2022 Team Jack funded the first colony of AMT mice at Notre Dame. The thought process is that if gene therapy works for mice affected with the GLDC mutation then it should also work for those with AMT but they needed the mice to determine this.

 

A high for us in 2023 was connecting with another NKH family in Italy whose daughter shares the same genetic mutation as Jack. Our new friends weren't aware of the ongoing NKH research, let alone that AMT-specific research was on the horizon so to connect with them and give them some hope was very special for us.

 

In 2024 we will be attending the NKH conference in April, re-vamping our website, working on JRU merchandise, getting Jack ready to start preschool (!!!) this July and planning/hosting our own JRU fundraisers (details coming soon). We were very proud to start the year by having our story shared in Stonehill's Alumni Magazine, click here to read!

 

We will forever sound like a broken record but we cannot thank everyone enough for their continued love, support and generosity. We could not do this without Team Jack behind us.