As you may know, Alzheimer's disease is growing at a staggering rate. Many of us have unfortunately witnessed a loved one wither away behind the veil of Alzheimer's disease. This could have happened to a grandparent, a great uncle, a spouse in later years, but what if I were to tell you that this happens to people in their 40s? And my dad was one of them.
There is a rare hereditary form of Alzheimer's disease that due to genetic changes causes the disease to occur much earlier than in the general population. These are individuals in the prime of their lives, working full-time, providing for their family, raising young children and teens, while at the same time wrestling with a 50-50 chance of inheriting the disease and passing it on to their children.
Who I am: My name is Lindsay and I'm the founder of Youngtimers. I love the mountains, coffee, dancing, french fries, and going on hikes with my dog Kaia. I'm epically bad at mornings and at accepting the status quo. When there wasn't a cure for my dad, I spent hours pouring through books at the library (pre-google times), and when I couldn't find anything I decided to take matters into my own hands, and I've been working in Alzheimer's research ever since.
Why I wanted to start Youngtimers: Immersed in the world of Alzheimer's research and advocacy, I quickly realized the importance of the Youngtimers community, and the lack of meaningful support and resources for this disease. Many questions and struggles continually go unanswered: How do I know I’m ready know my genetic status (i.e. that I will get the disease)? 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 and family (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?
Why Youngtimers is important: Youngtimers are affected by a disease called Early Onset Familial Alzheimer's Disease (EOFAD). Other names for it include Dominantly Inherited Alzheimer's Disease (DIAD) or Autosomal Dominant Alzheimer's Disease (ADAD). Youngtimers are unique because researchers can accurately predict when a person with EOFAD will develop Alzheimer's. With this knowledge, researchers can administer drug treatments years before symptoms appear (when disease prevention is too late to intervene). Youngtimers have contributed to science and the Alzheimer's field in many ways including: generating Alzheimer's models to study the disease, developing better tools and biomarkers to diagnose the disease earlier, and serving on the frontlines of Alzheimer's investigational drug trials.
On getting tax-exempt nonprofit status: We are currently in the process of waiting for our 501(c)3 US tax-exempt charity status. Our paperwork was filed to the IRS in early 2021. With COVID, it is hard to predict how long things will take, but we are hoping to begin fundraising efforts in summer of this year. In the meantime, if you'd like to make a donation, we have a fund set up with Washington University in St. Louis. They run and coordinate global clinical trials through DIAN: https://dian.wustl.edu/.
The future of the site: In the next coming months, we'll be adding a lot of great videos and articles to our website. We'll begin with focusing on disease basics, genetic testing, family planning, caregiving, clinical trial participation, and legal/financial planning and then expand to mental health, grief, prevention, diet and lifestyle, and research updates. We'll draw on multiple perspectives, from leading scientists, genetic counselors, psychologists, fertility specialists, financial planners to fellow Youngtimers to provide as much information on critical issues that affect this community. And please let us know if you have a question or specific topic you'd like us to cover.