This Giving Tuesday, hope is closer than ever.

The Cure Sanfilippo Foundation has helped bring a potential cure to the brink of FDA approval — but it needs a push to reach families like ours.

This season of gratitude, please consider donating to help fund the research, advocacy, and awareness that will get this treatment across the finish line — for Merrick, and for every child fighting Sanfilippo Syndrome.

Every share and every gift, no matter the size, brings us closer to making this cure a reality.

>> Donate to Giving Tuesday Fundraiser <<

Welcome to Hope for Merrick!

This page is dedicated to raising awareness and funds to support research for a cure for Sanfilippo Syndrome, a rare and devastating neurodegenerative disease affecting our beloved son, Merrick, and many other children around the world.

Merrick is a joyful child who loves puzzles, monster trucks, and Transformers. Despite his abundant energy and love for life, Merrick faces immense challenges due to Sanfilippo Syndrome, often likened to Alzheimer's in children. This heartbreaking condition leads to progressive mental and physical decline, with no FDA-approved treatment or cure currently available.

Our mission is to support the Cure Sanfilippo Foundation's efforts in funding critical research and clinical trials aimed at finding a cure. Through our fundraising initiatives, especially our "Cure Merrick" campaigns, community engagement, and spreading awareness, we aim to bring hope and action together to make a difference in Merrick's life and the lives of countless other children battling this disease.

Join us on this journey of hope and support. Together, we can make progress towards a cure for Merrick and all children affected by Sanfilippo Syndrome.

Thank you for your love, support, and generous contributions.

With gratitude, Nancy, Matt and Merrick

How you can help!

DONATE NOW

Other ways to help

A promising gene therapy for Sanfilippo syndrome—a relentless disease that robs children of speech, mobility, and independence—is stalled by FDA delays. Trials show UX111 can slow or preserve these abilities, offering hope where no treatments exist.

Yet despite strong data, approval was rejected over minor manufacturing issues, delaying access for at least 6–12 months. For children with Sanfilippo, every month means irreversible loss.

Our kids are losing their voices, so we need yours to help by contacting HHS Secretary Kennedy and FDA Commissioner Makary and ensure:

Swift review of resubmissions for rare disease drugs, especially for Sanfilippo and Barth.
Engagement with sponsors to resolve minor issues before rejecting applications.
The FDA holds direct meetings with patient communities impacted by recent delays, including Sanfilippo and Barth.
The FDA makes full use of existing regulatory flexibility when the science is strong and safety risks are minimal.

To help, pick one or all three of the options below. This isn’t just about Sanfilippo. Other rare disease patients are facing similar delays, and we need reform.