Where is the money going?​
We’re committed to two 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 our kids grow, everyday tasks like bathing, lifting, and moving them around our house are becoming increasingly difficult. Our SupportNow fundraiser is focused on making our home safer and more accessible—renovations, adaptive equipment, and modifications so Roman and Stella can thrive right where they are.

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Since Stella’s diagnosis, Jillian stepped away from her career to become their full-time caregiver and advocate, reducing our household income while costs continue to rise. SupportNow gives friends, family, and anyone moved by our story a way to make an immediate, direct impact on Roman and Stella’s daily quality of life.

 

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