Youngtimers

Description

EOFAD is a rare hereditary form of Alzheimer's disease that causes memory problems in people between the ages of 23 - 64+. People who inherit a genetic mutation that causes EOFAD have a 50% chance of passing the disease onto their children, making this a disease that affects multiple family members over multiple generations. The predictability of this disease also makes EOFAD patients ideal candidates to investigate and test Alzheimer's disease therapies in clinical trials. Despite their important role, up until the formation of Youngtimers in 2020, no current US organization was dedicated to helping EOFAD patients and families. Youngtimers seeks to leverage the power of EOFAD patients to accelerate research and foster a community to improve patient outcomes. Our mission is to develop much needed support and meaningful resources to address the needs of the underserved EOFAD community. Youngtimers seeks to provide a place of comfort during grief, a meeting place to share struggles, a reliable source for research findings and a source of knowledge and empowerment to make informed decisions about patient care. Our current services and programs include: disease education, disease journey guides, monthly virtual support groups and community-led research focus groups. In 2022, we hope to translate our website into Spanish, launch a mentoring program, host workshops, and continue building partnerships with experts in the field and other organizations dedicated to helping young caregivers and young onset hereditary dementia patients and families.