Youngtimers

Youngtimers is a nonprofit organization dedicated to improving the lives of individuals and families affected by early-onset familial Alzheimer's disease. We promote education, support, community, and research for this critically important yet underserved rare Alzheimer's disease patient population, considered by many researchers to be the key to solving Alzheimer's disease.

In 2020, Youngtimers was created by a group of passionate and informed familial Alzheimer's disease stakeholders who recognized a great gap in the Alzheimer's world. Familial Alzheimer's disease represents a unique disease and patient population that can inform solutions for all of Alzheimer's disease. It is a hereditary disease and the predictability of the disease makes familial Alzheimer's disease patients ideal candidates to uncover biomarkers, study underlying pathways of the disease (decades before symptom onset), and test investigational therapies. However, little education, support, and resources are available for familial Alzheimer's disease patients and families placing many barriers to their research participation. By providing support and resources for familial Alzheimer's disease, we can leverage the power of this unique community to accelerate Alzheimer's research and foster the community and infrastructure needed to improve patient lives and outcomes. In 2021, Youngtimers received its 501(c)3 nonprofit status.

Our goal is to build a worldwide familial Alzheimer's disease community providing much-needed education and support and become strong partners with research institutions to increase clinical trial participation. Youngtimers will serve as a unique facilitate cross-disciplinary research collaborations and approaches, ultimately accelerating research and encouraging innovative approaches to cure Alzheimer's disease.

In 2021, Youngtimers hosted over 20 virtual support groups for asymptomatic, symptomatic, and caregivers in the community, partnered with Washington University in St. Louis to organize programming for the 2021 DIAD Family Conference, received the Global Genes RARE Meet-Up Grant, raised over $30,000, and worked with researchers and experts to generate patient-centered online education and resources. Next year, we hope to raise funds to translate our website to reach more diverse communities affected by this disease, to hire more social workers and psychologists to better support the mental health needs of our community, including the creation of guidelines for social workers and health professionals treating familial Alzheimer's disease patients, as well as, to expand our support group and Buddy Program to include spouses of at-risk individuals, and teens and young adults. In 2021, we created a patient working group to identify and address the increased barriers that young women of reproductive age face when considering clinical trial participation, next year we will expand these efforts and identify the barriers that inhibit underserved and minority populations from participating in research within our community.

Youngtimers needs your support to develop a sustainable, efficient, and impactful organization that focuses on addressing the needs of the familial Alzheimer's disease community through its core services: disease education and resource hub, monthly virtual support groups, one-on-one mentoring, workshops and conferences, community-led research focus groups, and grants/awards.

Here are a few ways you can support Youngtimers programming:

- $150 to host one of our monthly support groups (includes platform hosting fees and cost of a trained and licensed social worker).
- $500 to cover domestic travel expenses for one familial Alzheimer's disease family to attend the DIAD Family Conference
- $750 to cover a multi-part workshop for our community that focuses on dealing with a mental health issue associated with the disease (genetic testing, losing a parent, etc.).
- $1,500 to translate our website into Spanish to better reach this underserved community.
- $2,000 to cover international travel expenses for one familial Alzheimer's disease family to attend the DIAD Family Conference
- $5,000 to cover the cost of a patient-centered research project that focuses on understanding the barriers to research participation.

To help us build a more sustainable organization, you can also support us in the following ways:

- $45,000 to hire grant writers to compete in several grant cycles.
- $45,000 to fund the operation and content development of our website as well as focus on improved community engagement strategies to reach and grow our audience.
- $125,00 to fund support group facilitators, psychologists, and a Programs Coordinator.

The early onset familial Alzheimer's disease community is scattered throughout the United States and across the globe. Individuals and families have been identified in Colombia, the U.S., Mexico, Germany, Puerto Rico, the Netherlands, the U.K., Japan, along with many more.