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Where is the money going?​

We are primarily fundraising for Wylder Nation Foundation, a non profit that is dedicated to funding and researching treatments for the more severe form of ASMD. Their research includes a unique small molecule that passes the blood brain barrier (BBB) and has demonstrated remarkable results at potentially slowing or stopping the rapid course of neurodegeneration that happens in ASMD. Additional research is surrounding a gene therapy that has the potential to replace the defective gene responsible for Roman and Stella's disease with a functioning working copy of the gene for a more permanent treatment. We would also like to be able to donate to other future, promising potential treatments being researched and developed for the neurological aspects of ASMD. Finally, small portions of the money raised will be used to help offset excessive costs our family faces due to the disease. Roman and Stella need a lot of specialized equipment and devices to improve their quality of life that are not always covered by insurance. Since Stella's diagnosis, Jillian has had to step away from her full time job to become their primary caregiver, which has put a financial strain on our family.

 

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