Who are we?
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.
An open letter from our founder- Why Youngtimers?:
My dad was 49 years old when he was diagnosed with early onset Alzheimer’s disease. I was eighteen and had just graduated from high school. I remember sitting at the kitchen table when my mom broke the news. We had been noticing symptoms for a while, but I think we were all in denial. I just couldn’t imagine the strongest, most generous, most intelligent guy I knew could have Alzheimer’s. The next day I went to the library and checked out every single book on Alzheimer’s disease; in the following months, I signed up for every neuroscience class on campus; and when that wasn’t enough I joined a lab studying Alzheimer’s disease. That was over 10 years ago and despite the heartbreak this disease has brought, it has also led me on a wonderful journey of discovery; discovery of self, inner passion, and an un-ending drive for research. With every turn, every frustration that is getting a PhD, every confusing result, I have pushed forward, all the while pursuing the dream of finding that one key that would solve all of my family’s problems.
Despite my day-to-day pursuit of better understanding the biological component of Alzheimer’s, coming to terms with the other facets of this disease continually eludes me. Watching your parent slowing deteriorate, losing their memory of you, themselves, and their dignity. Then losing your parent. The grief. The sorrow. The anger. You can’t understand what kind of world lets this happen to the best person you ever knew. The unfairness of it all. The grief never leaves you, but then something new presents itself. The thought that you carry the mutation too. Something grips your heart and you are never the same. Every relationship, every long-term goal, every plan becomes tainted by this looming dread. Then you find someone who you let in and who can’t live without you, even if it means only having you for a few years. Then you start talking about having a family and again that stupid mutation presents itself. To say that Alzheimer’s disease is a part of my life is an extreme understatement. Not only is it my job, but it is my past, my present, and my future.
Throughout your life you run into people who have experienced loss, who have also lost parents at a young age, who have also watched this disease wreak havoc on their loved ones. But you never meet someone who knows the deepest darkest thoughts that comes with early-onset Alzheimer’s disease. That is until you meet another rare individual who has also been affected by early-onset Alzheimer’s disease. There are no words to express what that feels like. Like coming home. Like have a brother or sister that gets you the moment you speak. Suddenly you have someone who all have the same thoughts and worries. Who is just as motivated to make a difference. No one looks at you with pity. It is just acceptance and warmth.
It was upon meeting these individuals and now family members that I realized what an impact we can have by being together. Not only for each other, but for others who have not yet found their Alzheimer’s family, who have not yet found their voice. I am so grateful to be part of this unique group of individuals and I believe that together we’ll be able to make tremendous strides in the field.