CureJax

Sanfilippo is stealing our son’s childhood.

CureJax is raising awareness, funding, and advocacy for families fighting a rare, rapidly progressive neurodegenerative disease.

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Our Story

Jax is four years old.

He’s loud, vibrant, and full of life. He loves Paw Patrol, fire trucks, riding quads with us, being outside, and most of all — baseball. He’s happy. He’s loving. He’s ours.

Jax was diagnosed with Sanfilippo Syndrome Type B (MPS IIIB), a rare and progressive neurodegenerative disease. It steals skills. It steals time. And time is not something we have.

When we received his diagnosis, we had a choice: sit back and watch… or fight.

We chose to fight.

We fight for access.
We fight for treatment.
We fight for research.
We fight to remove the obstacles standing between children like Jax and the cures they deserve.

Our goal: build a community that shares his story, supports research and access, and pushes for better systems for families.

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What is Sanfilippo Syndrome Type B?

Sanfilippo (MPS III) is a genetic disorder where the body can’t properly break down certain complex sugars, leading to harmful buildup—especially in the brain.

What it is

Type B (MPS IIIB) is caused by changes in the NAGLU gene. This affects an enzyme needed to process heparan sulfate.

What it does

As buildup increases, children can lose speech, skills, and independence over time. It is neurodegenerative and progressive.

Why time matters

Earlier support and intervention efforts matter. Families are racing the clock while navigating care, coverage, and access barriers.

Plain-English version: Sanfilippo slowly damages the brain over time. Kids often appear typical early, then gradually lose skills.

How you can help

Three actions make a real difference: donate, advocate, and share.

Advocate

Help improve access to Medicaid waivers, rare disease support, and insurance accountability. Your voice matters.

  • Contact your representatives
  • Ask for rare disease policy reforms
  • Support faster access to care
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Share

Sharing our story helps others understand the urgency and builds community. One share can reach the right person.

Tip: “Please take 60 seconds to learn about Sanfilippo Type B.”

Updates

Short, dated updates build trust and help people stay connected.

Feb 27, 2026

Launching this site

Today we launched CureJax.org. Our next step is sharing it widely and building support for families fighting Sanfilippo.

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Contact

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