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Introducing the Jason Michael Brescia Foundation
The Jason Michael Brescia Foundation is a 501c3 non-profit organization founded to help research and cure Infantile Liver Failure Syndrome (ILFS-1).
On December 24, 2022 Jason Michael Brescia Jr. was born via an emergency c-section at 27-weeks gestational age. In the ensuing days he suffered various setbacks unrelated to his prematurity. After over a month of struggles, in-depth genetic testing revealed that Jason had a rare autosomal recessive disorder known as Infantile Liver Failure Syndrome, otherwise referred to as ILFS-1.
ILFS-1 is a genetic, parenchymal hepatic disease characterized by acute liver failure that manifests in the first year of life. A Genetics In Medicine article in 2020 describes ILFS-1 as "characterized by recurrent elevation of liver transaminases up to liver failure in conjunction with abnormalities of growth, blood, nervous system, and musculature."
Over the course of his life, which was spent entirely in the neonatal intensive care units at NYU Langone Winthrop in Long Island and Mt. Sinai Hospital in New York City, Jason fought valiantly against a multitude of ILFS-1 symptoms such as edema, kidney failure, and irreversible organ damage, until finally on February 17, 2023 the terrible disease took his life. Though his time with us was brief, Jason's strength and desire to live despite the severity of his condition has inspired us to create this foundation, through which we intend to:
- Support doctors and other professionals in researching treatments and a cure for ILFS-1.
- Educate maternal-fetal medicine specialists and OB/GYNs about this disease so that they can screen for ILFS-1 in early genetic testing. During our pregnancy we received multiple rounds of genetic testing and this condition was not identified.
- Help patients diagnosed with ILFS-1 receive the best care possible.
Our hope is that in the future ILFS-1 will be identified and treated while the baby is still in the womb. We want people to know what Infantile Liver Failure Syndrome is, who Jason Michael Brescia Jr. was, and together with your help we want to ensure that no child suffers the way that he suffered ever again.
Please join us in making a difference. Any donation will help make an impact, and because of our 501c3 status, your contribution will be tax deductible.
Thank you in advance for your support and let's keep fighting Jason's fight.
Sincerely,
The Brescia Family
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