In 2013, Liz Matthews, \u201826, visited the Eastern State Penitentiary in Philadelphia with her sister and father. Too afraid to walk through the prison\u2019s haunted corridors, she stayed behind with her father to enjoy ice cream while her sister went ahead.<\/p>\n
But as they drove away at the end of the trip, Matthews realized something was wrong: her sister wasn\u2019t in the car. Her father had forgotten her.<\/p>\n
Shortly after, her father was diagnosed with frontotemporal dementia.<\/p>\n
By 12, Matthews had lost her father. He died in 2016 at 52 years old. In the years that followed, she turned her loss into action, pursuing research and advocacy surrounding frontotemporal dementia.\u00a0<\/p>\n
According to the National Institute on Aging<\/a>, frontotemporal dementia is a rare type of dementia that typically affects younger individuals compared to other forms of dementia. There\u2019s currently no cure.<\/p>\n Matthews said younger-onset dementia affects families differently than diagnoses later in life, when individuals may struggle to hold a job or care for children.<\/p>\n \u201cI was a young child when my dad was experiencing (frontotemporal dementia), and in his case, his entire personality changed, which became a very scary situation for us,\u201d she said. \u201cIt\u2019s not just memory loss or being confused. You really become a different person.\u201d<\/p>\n Matthews said her father was always her role model because he overcame a difficult childhood to become a successful dentist, start a family and live life to the fullest. She said he actively pursued his life passions \u2014 even joining a band and learning to fly a plane.<\/p>\n \u201cThe idea of going through something traumatic and turning it into a way to help other people and creating good in the world is something I try to take forward from him,\u201d she said.<\/p>\n In the field of dementia, Matthews said younger-onset cases are often left out of research because many studies exclude participants under 65, which she called an arbitrary cutoff.\u00a0<\/p>\n Because the disease is rare, Matthews said she often felt alone, not knowing other families who shared her experience. That isolation motivated her to support others facing similar challenges.\u00a0<\/p>\n Her mother said Matthews has been committed to doing the right thing from an early age.<\/p>\n \u201c(Matthews is) a really great person and is never afraid to do what she feels is right,\u201d she said. \u201cHer father would be so proud of her \u2014 over the moon.\u201d<\/p>\n Matthews said she volunteers for the Association for Frontotemporal Degeneration <\/a>and has raised about $7,000 for the organization since 2020. She also founded the National Young Adults Support Group in September 2024, which supports children of parents with the disease.<\/p>\n Sandra Gonzalez-Morett, an ambassador for the Association for Frontotemporal Degeneration, said she was one of the first people Matthews met who also had a parent with the disease. Matthews said Gonzalez-Morett has been an important mentor over the years.<\/p>\n Gonzalez-Morett said she\u2019s always been impressed by Matthews\u2019 compassion and perseverance, adding she\u2019s seen her grow in confidence over the last four years.<\/p>\n \u201cI was blown away by (Matthews\u2019) passion for the science around (frontotemporal dementia), as well as her passion for the caregivers, because of her own experience with her father\u2019s (frontotemporal dementia),\u201d Gonzalez-Morett said. \u201cIt has been a passion of hers to make other families\u2019 experiences better than her own \u2014 better than mine \u2014 (and) just improving the system in any way she can.\u201d<\/p>\n Matthews said her interest in frontotemporal dementia shaped her academic path, leading her to pursue research in neurodegenerative disease. She worked in the Babcock Lab at Lehigh for two years, studying neurodegeneration using fruit fly models, and was a summer research intern at Thomas Jefferson University, where she researched both frontotemporal dementia and amyotrophic lateral sclerosis.<\/p>\n While those experiences were valuable, she said some of her most formative moments occurred outside the classroom, particularly through study abroad.<\/p>\n