WHO WE ARE
Youngtimers is a nonprofit that was started by a group of early onset familial Alzheimer's Disease family members and other stakeholders to help better address the needs of early onset familial Alzheimer's Disease individuals and families. Over the course of the last few years, many from this community have faced many difficult decisions and situations, either when it comes to making a decision about getting tested, coming up with better caregiving strategies, getting insurance, making family planning decisions, or figuring out how best to tell kids/friends/family about the disease. To date, we have yet to find an organization that helps us adequately navigate these difficult and complex issues that affect our unique disease population. We hope Youngtimers can fill this need.
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An Open Letter from our Founder
At 17 years old, sitting at our kitchen table, I was told my dad, at 48, had been diagnosed with Alzheimer’s disease. When I realized no library book could cure him, I pursued a degree in biology and joined an Alzheimer’s disease lab. I couldn’t just sit on the sidelines. Unfortunately, I was not able to save my father, but I knew the disease would come for me, and much worse, my siblings. It is for them that I dedicated the rest of my life to research. After earning my Ph.D. in neuroscience, I began working as a postdoctoral scholar, where I formed essential collaborations with dementia researchers and lead my own research project. Over the years, my advocacy efforts have enabled me to develop close relationships with other early onset dementia patients and their families. Through invited talks, panel discussions, and active conversations on our private Facebook page, I am struck time and again by the unanswered struggles of this community.
Youngtimers was founded to address the unmet needs of this rare disease population by providing a community for invaluable patient interactions and support, building education and resource tools to improve daily lives, and establishing a platform for the patient voice, which we believe is critical for driving effective research efforts.