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“ I wanted to reach out to let you know I received my care package yesterday. THANK YOU! Within a few minutes of just glancing through it yesterday I have seen a lot that grabbed me. I am now sitting here reading the packet. I have it ready to carry every where I go.” - Mickey “I received my package yesterday. What a sweet surprise! I needed a mile on my face. trying to stay strong but sometimes I just break down. What a horrible disease this is. I’m afraid we have a tough road ahead of us. My honey is only 61 years old. No one deserves this!!” -Janice “I just got done reading all the information in your care package, next I will pass this along to my mom and my sister! This is great information and is extremely helpful. I’m eagerly starting the book today too! You both are doing such a wonderful job in spreading awareness and I too plan to do the same in the future. I believe my dad is in the late stage, coincidentally his name is Louie (thankfully spelled different than “screwy Lewy”). My mom had a stroke 3 years ago yet she loves to read so having this in writing is going to help her understand. I’m sure your dad was an amazing dad, it shows in all the work you are doing to help others manage this horrible disease! THANK YOU!” - Lisa “Our package arrived today. Thank you so much. It’s such a wonderful thing you are doing. I truly appreciate all of the information. Hopefully my daughters will find it helpful too. We’re all still trying adjust to this new life we have and it’s hard on all of us but arming ourselves with as knowledge as we can will help.” - Carolyn “I received you box of resources. It’s tremendous what you have done and all that you have put together. This book, is the same one that I had been eyeing. I’m thrilled to have it. I’m flying to see my parents tomorrow and taking these items with e to share. Thank you!!” - Candy “Just got my package. It is a lovely presentation. I am grateful to you. I was just planning on printing out the GEMS chart and to m delight you have included it in your folder. I am excited to share this information with my HomeHelpers. Again, thank you.” - Bo “Good Morning! Thank you again for your care package! I finally sat down and got through some and not only is it valuable information but it helped us, my sisters and I, not feel so alone. Thank you for everything!” - Amy “I just received the care package. I cannot thank you enough! I cried just browsing through the contents, it means so much that you and your family care enough to create all of this to help others. Thank you ever so much. What a wonderful thing you are doing!” - Beth
When our father was diagnosed with Lewy Body Dementia in 2020, we entered a landscape that was far more complex than we anticipated.
We were introduced to Lewy Body Dementia WITHOUT treatment plans, WITHOUT medication regimens, and WITHOUT anything but a diagnosis. His neurologist said "I can diagnose, but I don't live it." We are that connection. We lived it with his diagnosis all by ourselves.
Once we left the clinic with our diagnosis, a different reality emerged and with it, a different set of questions.
What does this disease look like on a day-to-day basis?
How should we respond when symptoms shift unexpectedly?
How do we communicate this diagnosis to children, extended family, and colleagues?
How do families live well alongside a progressive and unpredictable condition?
It became apparent that even the most thorough clinical care cannot fully prepare families for the lived experience of Lewy Body Dementia. The disease impacts cognition, movement, sleep, behavior, and emotional regulation, often fluctuating in ways that challenge standard care models. Strategies that are effective one week may be ineffective the next. What appears manageable in theory can prove difficult in practice.
As caregivers, we needed more than medical guidance.
We needed support translating clinical insight into practical, sustainable caregiving strategies.
We needed validation that what we were observing at home was both real and shared by others.
We needed access to individuals who had navigated this journey and to professionals who understood Lewy Body Dementia beyond its diagnostic criteria.
Over time, we recognized that some of the most impactful support came through shared experience. Practical insights from fellow caregivers, meaningful peer connection, and the reassurance of being understood filled a critical gap between clinical care and daily life.
This realization became the foundation for the community we are now building.
We serve as a conduit between the advancements occurring in laboratories and clinics and the realities faced by families at home, helping ensure that knowledge is not only generated, but effectively translated.
Our father’s journey profoundly shaped our family and revealed a critical unmet need. In response, we are building the community we wish had existed from the outset. One that bridges clinic and home. One that values both scientific rigor and human experience. One that supports families in navigating this disease with clarity, dignity, and connection.
Our Foundation operates at the intersection of research, clinical practice, and lived experience.
