At 17, Mason Smith was your typical teenager and living a life filled with school, sports, lots of hanging out with friends and more growing up. That all came to an abrupt stop when his mother was diagnosed with a fatal and ultra-rare neurodegenerative disease, adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP). This young man who was just sprouting his wings took a harsh turn into adulthood as part of his Mom’s primary care team when she began to exhibit behaviors that were noticeable to Mason’s Aunt Heidi. Together, they both felt the need for further medical testing given that ALSP had already taken the lives of other family members. Mason knew that an ALSP diagnosis would change his mother’s life and usher him into adulthood and caregiving.