Our Champions
Go Find Some Joy
Caregivers are the quiet heroes of the ALS community, providing unwavering love, strength, and support while navigating the unimaginable physical and emotional challenges of this disease.
This November, in recognition of National Family Caregivers Month, Augie’s Quest honors these extraordinary individuals and the sacrifices they make every day.
For Denise Nakakihara, caregiving was an extraordinary act of love, devotion, and resilience. In December 2023, her husband, Darin, was diagnosed with ALS. Throughout his journey, Denise stood by his side as his wife, caregiver, and fiercest advocate. On April 22, 2026, Darin passed away, leaving behind Denise, their daughters, and a powerful legacy of love, courage, and hope.
We are grateful to Denise for sharing her personal journey.
In his final message, Darin shared a heartfelt reminder to cherish life and “Go Find Some Joy.”
1. What were some of the biggest challenges of your caregiving journey?
Surviving the physical and emotional exhaustion was one of the greatest challenges. Being ‘on’ 24/7 requires you to dig deep every single day, often finding reserves of strength you didn’t know you had.
In my lowest moments, I had to remind myself that
there would come a day when I would have so much freedom that it would haunt me. I knew that the very things I longed for in the hardest moments would one day be the things I would miss most.
2. What has caregiving taught you about love, strength, and resilience?
Even as ALS robbed him of his ability to walk, speak, and eat, he continued to find joy until the very end. His steadfast faith and his determination to embrace life, even as it changed in unimaginable ways, gave all of us the strength to endure what ALS threw at us.
We couldn’t control the disease, but we could control how we responded to it. Darin taught us that joy and suffering can coexist, that strength doesn’t always look like fighting, and that resilience can mean choosing to live fully within the life you have, even when it looks nothing like the one you imagined.
3. What do you wish more people understood about the physical and emotional demands of caregiving?
Caregivers need caregiving, too.
The focus is rightfully on the person living with ALS, but until you have walked in the shoes of a full-time caregiver, it is difficult to understand how completely consuming the role can be, both physically and emotionally.
Sometimes, the greatest gift you can give a caregiver is to notice what needs doing and simply do it. Don’t wait to be asked. Show up in the small ways. Those gestures can carry someone through more than you may ever realize.
4. What advice would I give to someone currently caring for someone with ALS?
Do what you can to take care of yourself. Get outside. Move your body. Find even ten minutes to fill your own bucket so you can continue to give to someone else. Ask for help, and allow people in. Your circle wants to help, so when they offer, let them.
And most importantly, cherish every single day, even the hardest ones. Cherish the quiet. Cherish the slow. Cherish the moments that don’t look like much at the time. And please remember: you don’t have to do it all alone.
5. What would you like people to know about the impact on families, beyond the ALS diagnosis?
ALS impacts every single member of a family. With Darin’s diagnosis, we each lost our hope of ‘forever’ and the dreams we had for what our future would look like.
Grief begins the day of diagnosis. Daily rituals change. Traditions are forever altered.
A “we” slowly becomes an “I.”
I lost my person. I lost the ‘we’ that had defined so much of my life. And now, I am working hard to figure out who ‘I’ am without Darin.
6. Looking back, are there moments or memories that hold special meaning for you?
In some ways, our family grew even closer through this disease. We became more intentional with our time, more aware of how precious it was, and more determined not to take a single moment for granted. We made the plans, and we made the time.
Some of my most cherished memories are found in the smallest things: the daily rituals, the familiar traditions, and the ordinary moments that might not have looked significant to anyone else but were woven into the fabric of our lives.
ALS changed so much about how we lived, but it also reminded us to pay attention. To be present. To appreciate the seemingly ordinary moments that, in the end, become extraordinary.
Those are the memories I hold closest.
7.How important was the support of family, friends, and the ALS community throughout your journey?
I credit our family, friends, and community, along with Darin’s faith, for giving us the strength and resources we needed to walk this journey. We could not have done it without them.
The emotional, physical, and financial support they provided allowed us to care for Darin in ways that would not have been possible otherwise. Their generosity made a tangible difference in the quality of his life and in our ability to navigate the demands of this disease.
I will never lose sight of what was given to us. I know how fortunate we were to be surrounded by people who showed up again and again, and I carry a deep responsibility to pay that generosity forward.
It is now part of my mission to extend that same compassion and support to others. No one should have to walk this disease alone. Our community showed us what love looks like when it becomes action, and I will be forever grateful.
8. As you reflect on the past year, what has helped you find strength and hope?
Throughout Darin’s entire journey with ALS, our family, friends, and community circled the wagons around us. They stayed especially close during his final six months of life, and they have continued to show up with that same love and steadiness in the months since his passing.
Darin lived his ALS years with purpose. He chose to use his experience to educate others, to connect with people, and to find joy even in the hardest circumstances. His motto has become his legacy:
“Go Find Some Joy.”
We continue to honor that mantra as we learn to navigate life without him. We are learning that joy and grief can go hand in hand. Finding joy doesn’t mean we miss him any less, and grieving him doesn’t mean we cannot experience happiness. Both can be true. We can carry the heartbreak of losing him and still find reasons to smile, moments to celebrate, and beauty in the life we continue to live.
9. Why is continuing the fight to find a cure for ALS so important to you?
Darin worked tirelessly to use his platform to educate others about ALS in the most authentic way possible. He shared his journey not simply to tell his own story, but to give people a window into the reality of this disease and to drive greater awareness of a condition that remains desperately underfunded.
It is an honor to carry his torch forward. I want to continue the work he cared so deeply about: raising awareness, supporting the ALS community, and pushing for the research and resources needed to change the future for families who will otherwise face this same devastating diagnosis.
This National Family Caregivers Month, we honor Denise and the countless caregivers whose unwavering love, strength, and sacrifices make an extraordinary difference in the lives of those facing ALS.
