Support the Darin Nakakihara ALS Fund
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Hi everyone! Help support our cause. It’s going to take our community to help our friend Darin Nakakihara’s family through their journey with ALS. Here is their story:
This story begins in the summer of 2022 with an unexpected fall in the garage, followed by another while taking pictures at school. By January 2023, Darin began to notice that something was seriously amiss. His strength on the left side of his body was declining, he developed “drop foot,” was experiencing nightly leg cramps, and his body was constantly twitching. Something wasn’t right. Initially, Darin was diagnosed with spinal stenosis, which led to neck surgery in May 2023. However, during his follow-up visits, his neurosurgeon, concerned about the lack of physical improvement, referred him to a neurologist for further evaluation. It was in November 2023 that Darin received the life-altering diagnosis of ALS, confirmed after dozens of tests in January 2024. From the moment of his diagnosis, Darin has been resolute in facing this disease, determined to find joy in each day. He has also committed himself to helping others who may face this devastating diagnosis, sharing his ALS journey on social media to provide insight and support. ALS is a cruel disease with limited treatments, none with lasting efficacy, and no cure. It is a 100% terminal illness, with an average life expectancy of 2-5 years from diagnosis. ALS gradually disconnects the brain from the muscles, slowly taking away the ability to walk, talk, eat, and eventually breathe. As Darin’s disease progresses, so does his need for assistance. The daily activities we often take for granted—walking, talking, sitting up, self-care—are becoming increasingly challenging for him. Each loss of ability requires supportive in-home care, assistive equipment, and home adaptations, all of which come at a significant cost, with an average annual out-of-pocket expense of $250,000 for an ALS patient. Darin and Denise have been deeply moved and humbled by the outpouring of support from friends, family, coworkers, their church community, and even strangers. The love and care shown to them have provided strength during this incredibly difficult time. They are profoundly grateful to everyone who has “shown up” for them and continues to do so. As close friends of the Nakakihara family, we are organizing this GoFundMe campaign to assist them during this challenging time. Our goal is to allow Darin’s loved ones to spend as much time with him as possible, free from the financial burdens this situation has brought. All funds raised will go directly to Darin and Denise to help with both immediate and long-term needs. Thank you for your consideration and well wishes for Darin and his family. #GoFindSomeJoy
This story begins in the summer of 2022 with an unexpected fall in the garage, followed by another while taking pictures at school. By January 2023, Darin began to notice that something was seriously amiss. His strength on the left side of his body was declining, he developed “drop foot,” was experiencing nightly leg cramps, and his body was constantly twitching. Something wasn’t right. Initially, Darin was diagnosed with spinal stenosis, which led to neck surgery in May 2023. However, during his follow-up visits, his neurosurgeon, concerned about the lack of physical improvement, referred him to a neurologist for further evaluation. It was in November 2023 that Darin received the life-altering diagnosis of ALS, confirmed after dozens of tests in January 2024. From the moment of his diagnosis, Darin has been resolute in facing this disease, determined to find joy in each day. He has also committed himself to helping others who may face this devastating diagnosis, sharing his ALS journey on social media to provide insight and support. ALS is a cruel disease with limited treatments, none with lasting efficacy, and no cure. It is a 100% terminal illness, with an average life expectancy of 2-5 years from diagnosis. ALS gradually disconnects the brain from the muscles, slowly taking away the ability to walk, talk, eat, and eventually breathe. As Darin’s disease progresses, so does his need for assistance. The daily activities we often take for granted—walking, talking, sitting up, self-care—are becoming increasingly challenging for him. Each loss of ability requires supportive in-home care, assistive equipment, and home adaptations, all of which come at a significant cost, with an average annual out-of-pocket expense of $250,000 for an ALS patient. Darin and Denise have been deeply moved and humbled by the outpouring of support from friends, family, coworkers, their church community, and even strangers. The love and care shown to them have provided strength during this incredibly difficult time. They are profoundly grateful to everyone who has “shown up” for them and continues to do so. As close friends of the Nakakihara family, we are organizing this GoFundMe campaign to assist them during this challenging time. Our goal is to allow Darin’s loved ones to spend as much time with him as possible, free from the financial burdens this situation has brought. All funds raised will go directly to Darin and Denise to help with both immediate and long-term needs. Thank you for your consideration and well wishes for Darin and his family. #GoFindSomeJoy
Organizer and beneficiary
Cynthia Sloan
Organizer
Laguna Niguel, CA
Denise Nakakihara
Beneficiary