Farber disease and SMA-PME exist on the same disease spectrum. Both conditions result from a deficiency in acid ceramidase, causing ceramides to accumulate in the body — leading to chronic inflammation and progressive damage to joints, nerves, and vital organs. Research into one disease directly advances understanding of the other, which is why our organization champions both communities with equal dedication.
In October 2025, a San Antonio family's fight against Farber disease was covered by KENS 5 news — bringing this devastating ultra-rare condition into the public eye and helping families across the country recognize that they are not alone. Zayd and his family were at the center of that story, speaking with courage about a disease most people have never heard of.
Their hope — and ours — is that the growing community of researchers, physicians, and families united around acid ceramidase deficiencies will find the breakthrough that changes everything. Zayd is the reason we fight. He and children like him deserve a future.
