WHO WE ARE
Youngtimers is a patient-led organization, founded by a group of early onset familial Alzheimer's disease (EOFAD) family members and other stakeholders to help better address the needs of individuals and families affected by this young hereditary dementia.
THE STORY BEHIND YOUNGTIMERS
An letter from our founder
At 17 years old, sitting at our kitchen table, I was told my dad, at 48, had been diagnosed with early onset familial Alzheimer’s disease (EOFAD). When I read all the library books on Alzheimer’s disease and realized there was no treatment that 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 could come for me, and much worse, my siblings. It is for them that I have dedicated the rest of my life to Alzheimer’s research, in the hopes of ending the suffering that my family and so many families face with Alzheimer’s disease. However, despite the best intentions of my research efforts, I realized there was more to be done.
Navigating major life changes and decisions can seem daunting on their own. For those facing EOFAD or the risk of EOFAD, whether they are patients, caregivers, or at-risk individuals, this disease adds further pressures and complexities as life and our relationship with the disease evolves, including our family, relationships, life experience, independence, career path, and financial plans (among many more). To face this disease is to be continually tested on one’s mental well-being, resiliency, and hope.
Over the years, I have had the privilege of developing close relationships with other early onset dementia patients and their families. Through these conversations, I have been struck time and again by their unanswered struggles. How do I know I’m ready to know my genetic status? How do I deal with the loss of a parent or child to this disease? How do I financially prepare for this disease (a disease that will affect me in my 40s)? How do I tell my friends about this disease? How do I tell my children about this disease? What can I do to stop or prevent this disease? How do I live my life knowing I have a 99.9% chance of getting this disease?
Youngtimers was founded to bring together EOFAD families and experts, that centers on providing meaningful support and resources for those affected by EOFAD, as well as building a community and platform to help drive critical research efforts forward.
When my father was sick, my family and I felt isolated and lost, my hope is that with Youngtimers, no EOFAD patient and family will ever have to feel alone.
A SMALL, UNIQUE, AND MIGHTY
POCKET OF THE ALZHEIMER’S COMMUNITY
Alzheimer’s disease is a brain disorder that progressively slows and inhibits a person’s ability to remember, think, reason, and eventually carry out simple everyday tasks. The disease usually occurs after the age of 65 and can be caused by multiple different factors. However, there is a rare genetic form of Alzheimer’s disease, known as early onset familial Alzheimer’s disease (EOFAD) caused by the inheritance of a mutation in one of three genes: APP, PSEN1, or PSEN2. These individuals start developing dementia and other disease-related symptoms as early as their 30s-50s. Additionally, they have a 50% chance of passing down the mutation to each of their children. For this reason, families with EOFAD often see this disease affect many loved ones (siblings, uncles, aunts, cousins) across multiple generations.
The early onset familial Alzheimer’s disease community faces many unique and often challenging decisions and situations, whether that’s making a decision about genetic testing, participating in research, caregiving, family planning, communicating with family about the disease, or finding effective strategies to cope with disease risk. 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. Youngtimers seeks to address these unmet needs by strengthening our community and providing invaluable support, building education and resource tools to improve day-to-day living, and establishing a platform for the patient voice, which we believe is critical for driving effective research efforts.
Providing support for these patients is not only advantageous to the EOFAD community, but the larger Alzheimer’s disease community as well. Our patient population has proven essential in understanding and elucidating how Alzheimer’s disease develops in the brain and has been, and continue to be,ideal research candidates for testing investigational drugs that target Alzheimer’s disease. Helping this community continue to stay engaged in research will ultimately help the rest of the world affected by Alzheimer’s disease.
Youngtimers is a 501(c)3 nonprofit organization dedicated to improving the lives of individuals and families affected by early onset familial Alzheimer’s disease. We work to achieve this by promoting community, education, support, and research for this community.
Community: We recognize the importance of building a strong, supportive, and inclusive community. Bringing individuals together can help unload pain and struggle – by speaking about the disease and its impact with others, what-can-seem-like an unbearable burden becomes lighter and facilitates healing.
Education: Education is the cornerstone of the informed patient experience. It can assist patients and families in better navigating their own disease journey, ultimately affecting their pursuance of and access to healthcare, improving patient engagement and outcomes.
Support: The financial burden of EOFAD goes beyond the immediate healthcare costs of those suffering from this disease; patients are diagnosed in prime financial earning and family supporting years, placing a burden on family members generation after generation. For this reason, we believe part of providing support to this community means helping to ease the financial strain that EOFAD can cause on patients and families.
Research: The EOFAD community plays a critical role in the global research effort to develop therapeutic strategies against Alzheimer’s disease. We aim to serve as a platform that amplifies patient voices in the push to drive research further.