The Jack Richard Urban Foundation

02/10/2024

Congratulations NKH Crusaders! Great news for our NKH community 🐝

15/08/2024

Our NKH community lost another bee today…NKH is so so unfair. Please keep Kai and his family in your thoughts. We are sending them so much love. You will not be forgotten, Kai 💙 M

It’s with the heaviest of hearts that Sam and Elly share that our beautiful darling boy, Mikaere Grant Hulance (Kai to all who knew him) has died. We are heartbroken, and we will always love him, and it’s in how we live moving forward that we honour him.

Funeral arrangements to come. Please, no flowers. Instead, please donate in his honour if you feel moved to: https://www.justgiving.com/page/forkaikai

Kua hinga te tōtara i Te Waonuia-a-Tāne.

——-

How is it the earth still turns? That the sun rises and sets and everything else is still moving forward when our beautiful beautiful boy has devastated our hearts with his death? How can others still laugh, and play and work and move, how has the earth not just swallowed us all whole? How is the wind still blowing and the clocks still ticking forward? (How is my heart still beating?)

This devastation I feel has hollowed me. I feel less, I feel like the world is less. How do we go on? I know the answer is in his honour, but I don’t know how to do that right now. I know that we carry this pain so he doesn’t have to, but my HEART.

Fly high my beautiful, beautiful darling boy. We love you so much, and we miss you already. We will always love you - our world is less bright without you. 


For everything we do, to Mikaere, in his honour x

22/07/2024

Big things happening in our NKH community! More to come.

15/05/2024

$15 on the 15th! Join us, today, May 15th for the Colorado Day Blitz! 🌟 We're asking you to donate $15 to help further research for NKH with all funds being matched dollar for dollar. Together, we can make a difference in looking for a brighter future for Jack and for all kids battling NKH! 💙 https://tinyurl.com/jruCOblitz

02/05/2024

Today, May 2nd, is NKH Awareness Day and this year we're doing something a little different. All May long we will be rallying support for groundbreaking NKH research at the University of Colorado through our Colorado Day Blitz! Dr. Johan Van Hove and his team in Colorado are committed to better treatment options for our kids but they need additional funds to accelerate their research. Please consider joining us in supporting Dr. Van Hove's research; every donation will be matched, dollar for dollar and every donation, no matter the size, makes a difference. Let’s advance NKH research together! 🧬 https://tinyurl.com/jruCOblitz

30/04/2024

Earlier this month we attended the NKH Conference hosted by the NKH Crusaders, read more about it here: https://wix.to/oPSQ95z

Check back later this week for more info about May's fundraiser for NKH research!

Earlier this month, Molly and Aunt Katie attended the annual NKH Conference hosted by the NKH Crusaders. This was our 2nd time attending since Jack was diagnosed in 2021. We will be the first to admit that we are extremely spoiled compared to other families - most travel a considerable distance to a...

21/03/2024

Reflecting on 2023: From milestones within the NKH community to strides with establishing the JRU Foundation, our journey continues. Check out our latest blog for an inside look at Jack's life, our progress, and updates on the Urban family. https://tinyurl.com/jru2023recap

29/02/2024

Every day is a journey of courage, love, and hope with our extraordinary Jack, who faces NKH with bravery and strength. On Rare Disease Day, we stand united, raising awareness, and celebrating the resilience of those living with rare conditions. Together, we shine brighter. 💙

06/02/2024

While we focus on NKH here at The JRU Foundation, there are over 6,000 known rare diseases and they affect millions of people worldwide. Behind every rare disease statistic is a story of bravery, resilience, and hope. This February, we're taking the time to honor the Rare Disease Community. Alone, we are rare. Together, we are strong. 💪💜