Where is the money going?​
We’re committed to three equally important priorities:

• Funding research for a cure.
  Through our ongoing partnership with Wylder Nation Foundation, we continue raising dollars for cutting-edge ASMD research, including a small molecule therapy that crosses the blood–brain barrier and shows remarkable promise in slowing or stopping neurodegeneration. Additional efforts include gene therapy research aimed at replacing the defective gene responsible for ASMD with a functioning copy for a more permanent treatment.

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• Meeting Roman & Stella’s direct needs.

As Roman and Stella grow, everyday care tasks like bathing, lifting, and safely moving them throughout our home are becoming increasingly complex and physically demanding.

Some funds raised go directly toward making our home safer and more accessible—home modifications, adaptive equipment, and essential updates that allow them to live and thrive in a space that meets their needs.

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• Creating meaningful memories together

We also use support to create lasting, meaningful experiences as a family. Whether it’s special outings, accessible travel, or moments of joy in between hospital visits and therapies, these experiences matter deeply to us.

In a life shaped by medical complexity, we are intentional about making space for connection, joy, and memories that we can hold onto forever.

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Since Stella’s diagnosis, Jillian stepped away from her career to become their full-time caregiver and advocate, which has significantly reduced our household income while medical and care-related costs continue to rise.

Our GoFundMe is now the central place for anyone who feels moved by our story to support both the long-term pursuit of treatments and the immediate, day-to-day needs that help Roman and Stella live safely, comfortably, and meaningfully at home.

 

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