Every Story, Every Symptom, Every Child: Why This New Sanfilippo Survey Matters

We recently sat down (again) with Jill Wood, founder and CEO of Phoenix Nest — and mom to Jonah, who lives with Sanfilippo Type C. Jill’s message to our community was simple but urgent: we need data, and we need it now. Phoenix Nest has launched a short caregiver survey designed to capture what only families can describe — the real, everyday challenges of living with Sanfilippo. This information could directly influence how clinical trials are designed, how treatments are approved, and ultimately, how quickly we move toward a cure.

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Understanding What This Means for Our Community
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Phoenix Nest has created a 20-minute caregiver survey for all Sanfilippo types (A, B, C, and D). It focuses on behaviors, speech, and communication — the small details that define our children’s days but rarely make it into medical charts.

The responses will form the foundation of a Clinical Outcome Assessment — a key requirement for FDA approval of any new treatment. Without it, therapies stall before they ever reach the starting line.

“We need to educate the FDA about what this disease really looks like,” Jill said. “Families are the experts — your words matter.”

That’s why this effort is so critical. The survey will inform natural history studies that track how Sanfilippo progresses over time, helping scientists and clinicians understand how to measure change — and how to recognize when a treatment is working.


Your Voice Is the Missing Data

This survey isn’t written for scientists — it’s written for us. Parents. Siblings. Therapists. Anyone who knows these kids best. You don’t need medical terms. You just need honesty. If your child runs into the street without fear, describe that. If they repeat the same phrases every day, share that. If they’ve stopped speaking or walking, note that. These details are what make this data real.

“Every description — every detail — becomes part of the blueprint for future treatment,” Jill said. “We can’t build a cure without it.”


We Need This Data — Lives Depend On It

This isn’t another research form to fill out and forget. This is how we make sure the world hears what Sanfilippo really is.

At The Sanfilippo Project, our mission is to unite families and amplify their voices — to make sure that the lived reality of our children is never lost in translation.

Now, we have a chance to directly accelerate research by doing what we already do every day: describing our kids.

Take 20 minutes. Share your story. Encourage others to do the same.

👉 Click to take the survey:  Sanfilippo Caregiver Survey

The faster we act, the sooner real treatments can reach our children. Let’s make our data impossible to ignore.

​HOW TO FILL OUT THE SANFILIPPO SURVEY (3 minutes)...

Every description - every detail - becomes part of the blueprint for future treatment. We can't build a cure without it. "

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FULL INTERVIEW (17 minutes).... 

We need to educate the FDA about what this disease really looks like. Families and caregivers are the experts - your words matter "

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