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Posted by on Mar 12, 2019 in Foundation NewsLine, Type A |

Jeff Bebout – ASMD Story

NNPDF community member Jeff Bebout was born with an enlarged spleen and liver and it wasn’t until the age of three that he was diagnosed with Acid Sphingomyelinase Deficiency (ASMD). In the following video Jeff describes what it is like to live with ASMD. He shares how the disease has impacted his life and life decisions, highlighting both the physical and emotional challenges that he faces as a result of having a rare disease. To watch the video follow this link: