Chuck Johnson's ALS Support Team
Help support the Johnson family
as they navigate life with ALS
#MotherChuckingALS
Watch Nicole and Chuck's speech about their story at the ALS ONE Snow Ball in March 2025
MAke Way For Chucklings | About Us
Chuck and Nicole's Story
Chuck and Nicole’s journey began in 2016 with a whirlwind romance, meeting on Tinder and swiftly progressing to marriage and two wonderful kids.
In June of 2023, Chuck began experiencing shaking in his hands, but didn’t think much of it. And so they continued to enjoy their summer. Then, after deciding to add to their growing family, they became pregnant with their third child in September.
Chuck’s health began to decline and by November he was noticing significant changes, marked by unexplained symptoms and alarming weight loss. Initially attributed to potential liver issues, further evaluation led to a devastating diagnosis. At the age of 38, Chuck was officially diagnosed in February 2024 with limb-onset, sporadic ALS. As they grappled with this life-altering news, Nicole took proactive steps to secure childcare support, adjusting their earlier plans for Chuck to become a stay-at-home father.
Amidst the emotional turmoil, they found solace in welcoming an au pair named Wendy into their family, preparing for the challenges ahead with resilience and hope for the future.
Throughout all of this, Chuck has maintained his sense of humor and continues to keep us laughing with his quick one-liners. Chuck engages the kids with his new adaptive equipment and is grateful for the arrival of Jenna who was born on May 28th, 2024. Charlie, Alana, and Jenna complete and pay tribute to Chuck’s initials CAJ!
Show Your Support in the Following Ways
Click here to view the full google doc on ways you can help
Meal Train
Sign up to contribute a meal for the family. Coordinate a delivery to the house or purchase a giftcard to help reduce meal time decision making.
ianacare App
Use the ianacare app (iana stands for “I am not alone”) to sign up for time slots to help with childcare, appointments, and other household chores/errands. Download the app below and then text Michelle to get a link to join Chuck's team.
Make A Donation
To contribute financially, you can donate to The CAJ Trust by clicking on the following link
Learn More
01
ALS ONE Organization
ALS ONE, based in Whitman, MA and is an unprecedented partnership of ALS researchers, clinicians, and care providers who have joined forces to advance critical research towards a cure while simultaneously providing essential equipment and resources to individuals currently living with the disease.
02
Compassionate
Care ALS
(CCALS)
CCALS, based in Falmouth, MA is a non-profit organization that provides various services and resources, including equipment, educational workshops, Medicare/Medicaid assistance, guidance and awareness in living with ALS, caregiving, and end-of-life issues.
03
Pete Frates Family Foundation
The Peter Frates Foundation was founded by the family of Pete Frates, who was a prominent advocate for those with ALS and pioneered the "Ice Bucket Challenge." It is is a 501c3 non-profit with the mission to assist progressed ALS patients and their families with the overwhelming cost of home health care.
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