💙 About Nate's Nation

Nate's Nation was established to raise awareness for Neurological disorders such as NBIA PKAN. We also are an active part of raising money to support PKAN Gene Therapy Research through the Loving Loic Foundation.

Nathaniel was dignosed with Classic NBIA: PKAN on February 11th, 2025 via MRI and genetic results confirmed diagnosis on April 23rd, 2025. Nate started showing developmental delays around 9 months old and since then we have advocated for an answer! Nate has seen 5 pediatricians, 3 Neurologists, 1 Cardiologist, 1 Endocrinologist, 1 Urologist, 1 Ophthalmologist, 1 Oncologist , 3 Allergists, and 1 Geneticists. It took moving states and finding an amazing pediatrician to listen and believe me. I listened to a doctor tell me “it’s just his Autism” when we knew something else was going on. Vanderbilt Children’s tested and confirmed the final PKAN diagnosis that explained every single symptom. Nate checks every box. Our lives changed in an instant.

People often tell me how strong I am, but my strength doesn’t come from me. It comes from Him. God provides new strength every morning to keep us going, and Nate reminds us every day what the faith of a child can do.

This year we’ve learned to slow down — to soak up every giggle, every snuggle, every “normal” day. We have been surrounded by so much love from friends, family, our church community, and even people we’ve never met.

We view everyday differently now. It is an opportunity to love each other, make memories and ensure my children truly know Jesus. If you know Nate, you know he is the HAPPIEST boy and right now doesn’t allow PKAN to slow him down much. However, PKAN is terminal, it is a fast progressive disease and that’s our reality. The doctors have warned us of what’s to come and right now there is no stopping it.

Now, we’re inviting you to be part of Nate’s Nation, a community of family, friends, and supporters coming together to raise funds for the PKAN Gene Therapy Project through the Loving Loic Foundation, a 501(c)(3) nonprofit dedicated to finding a cure for PKAN. By walking and giving with Nate’s Nation, you’re directly supporting Loving Loic Foundation’s work to move life-changing gene therapy closer to children like Nathaniel.

Why We Walk

Nathaniel has PKAN, an ultra-rare neurodegenerative disease that slowly takes away a child’s ability to walk, talk, eat, and move, while leaving their mind fully aware. There is currently no approved treatment or cure.

But there is hope.

Through the Loving Loic Foundation, researchers are actively working on a gene therapy that aims to stop PKAN at its genetic source. Funds from Nate’s Nation: Walk for a Cure go directly to this effort.

Your support doesn’t just mean “awareness.” Your support could quite literally help save Nathaniel’s life and the lives of children like him.

More information about the PKAN Gene Therapy Project can be found on the Loving Loic Foundation’s website:
www.lovingloic.org/gene-therapy-project

Nate's Nation: Walk for a Cure

By Loving Loic Foundation

Nate's Nation: Walk for a Cure

Step by step, bringing hope and gene therapy closer for kids with PKAN.