Sanfilippo Syndrome or Childhood Alzheimer’s is a progressive and fatal disease affecting 1 in 70,000 children. It is a genetic condition that affects the metabolism of complex molecules and results in severe damage to the entire body, but most significantly to the brain. Children go on to experience progressive dementia similar to Alzheimer’s, stealing away their skills and knowledge, until they pass away, often in their teenage years.
This is how the Bauer family of companies was connected with Liv’s story and chosen to be recipient for our March donation. A small way for us to help raise awareness of Sanfilippo Syndrome.
Our companies began in the fall of last year to make a donation to a charity or group who is making a difference each month. The request for causes was shared with our installation crews at our annual safety training day and Liv’s story was shared by Jason and Shanny Kuzma. Shanny did a photo shoot for the Jordan family and learned of Liv’s fight at just 3 years old. A missing enzyme causes the build-up of cellular waste which causes progressive dementia, extreme behavior and sleep disturbances, seizures, and early death in the teen years. Families are in a race against time.
When we learned of Liv and Childhood Alzheimer’s, it was right before her family was moving to Oakland, CA to be part of a clinical trial in an attempt to stop the progression of the disease. We weren’t sure if they needed help for the move or which way to assist. When we contacted the Jordan’s they said please send our companies’ donation to the Cure Sanfilippo Foundation because they have paired up with this Foundation to continue to raise funds for additional research, for treatments, and one day a cure for this terrible disease.
Please visit the Cure Sanfilippo Foundation’s page to learn more and help raise awareness. https://curesff.org/