Turning Diagnosis into Hope

When Lauren Schwarze’s daughter Ashley was born, the journey ahead was uncertain. Doctors noticed complications before she even entered the world — she wasn’t growing properly in utero, and after birth, she spent a month in the NICU. From that moment on, Lauren and her family entered a long and often isolating medical journey, filled with unanswered questions, countless hospital visits, and a hope for clarity that took nearly a decade to find.

In May 2024, after eight years of searching for answers, Ashley was diagnosed with ReNU Syndrome, a rare and newly identified neurodevelopmental disorder caused by mutations in the RNU4-2 gene. With this discovery came both heartbreak and hope — and it was the catalyst for Lauren and five other mothers of children with the syndrome to create ReNU Syndrome United.

Founded in 2024, ReNU Syndrome United is a nonprofit that brings together families, medical professionals, and researchers to accelerate diagnosis, raise awareness, and push for the development of treatments. With offices and outreach based in Texas and beyond, the organization exists to bridge the gap between science and support, turning difficult diagnoses into sources of community and strength.

“ReNU” stands for something more than just a gene — it symbolizes renewed hope for families who have spent years in the dark. Though the condition is newly discovered, researchers estimate that over 100,000 people worldwide may be affected, making it one of the most common monogenic neurodevelopmental disorders. Yet, it remains underdiagnosed and underfunded.”

Lauren, a founding board member and treasurer, explains, “We started this nonprofit to make sure families don’t have to go through what we did—feeling alone, unheard, and unsure of what comes next.”

At the heart of ReNU Syndrome United is connection. Through online forums, a global family registry, educational resources, and social media support groups, the organization builds a space where families can share, learn, and lean on each other. Their upcoming ReNU Hope Conference, scheduled for July 23-25, 2025, in New York, will bring together over 150 families, clinicians, researchers, and biotech leaders in a groundbreaking event focused on support and solutions.

For families, receiving a diagnosis can be overwhelming, but it also brings clarity and a renewed sense of direction. ReNU Syndrome United offers tools to help them navigate this new path — everything from emotional support to medical guidance. Their mission is simple yet profound:

Help families find a diagnosis

Build a supportive and informed community

Fund and promote research for treatment

Advocate for awareness within the medical community

Offer compassion and support throughout the rare disease journey

For researchers and medical professionals, the organization offers tools like AI-powered facial recognition software, genetic and clinical data sharing, and access to a growing network of scientific collaborators. By partnering with top universities and biotech firms, ReNU Syndrome United is actively working to turn scientific breakthroughs into real-world treatments.

Ashley’s story is at the core of this movement. From a fragile start, she’s become a joyful, determined child who defies expectations. Though she’s legally blind, nonverbal, and lives with epilepsy and osteoporosis, she navigates life with an AAC communication device, a love of swimming, a neighborhood golf cart routine, and a fan club of friends and neighbors who adore her.

She thrives thanks to the dedication of her therapists, her family, and her care team at Cook Children’s Hospital in Fort Worth. “Ashley’s brain works,” Lauren says with conviction. “It’s like a switch just hasn’t been fully flipped yet. And with the right advancements,
I truly believe there’s someone out there who can help make
that happen.”

Ashley’s resilience inspires ReNU Syndrome United to keep pushing forward. The group believes that with community support, scientific collaboration, and increased awareness, the future for children like Ashley can look much brighter.

“We’re just a group of parents fighting for our kids,” Lauren says. “There’s hope out there—we just need to make it happen.”

To learn more, donate, or connect with the community —
ReNUSyndrome.org

Join the Facebook community —
facebook.com/groups/rnu42

Or contact Lauren at —
lauren.schwarze@renusyndrome.org