Frates family helps North Andover woman navigate husband's ALS diagnosis
Nicole Johnson plays "Ring Around the Rosie" with her three kids, ages 5, 3, and under 1 on her North Andover lawn. On the outside, she is calm and smiling, unable to tumble under pressure. On the inside, Johnson says her head is brimming with loose ends needing to be tied and grief she has no time to feel.
On Valentine's Day 2024, Nicole's husband Chuck was diagnosed with Amyotrophic Lateral Sclerosis or ALS, a fatal neurological disease, while Nicole was expecting their youngest. A few months after baby Jenna's birth, via C-section, Chuck was already confined to a wheelchair and Nicole took over his care, helping him into the car and watching him overnight.
"I started doing that probably like a month postpartum out of necessity," she said.
In the face of endless uncertainty, she reached out to Nancy Frates, an ALS patient advocate and mom of Pete Frates, who founded the viral Ice Bucket Challenge in 2014, spreading awareness of the disease globally.
Nicole says Frates told her to focus not only Chuck's treatment but also his care within their home, which for ALS patients can cost up to $250,000 a year or more.
"She was like you need to create a team behind you, support, and you need to raise money for you," Nicole said.
"Make Way for Chucklings"
Nicole formed "Make Way for Chucklings", a non-profit organization supporting their family and spreading awareness of ALS. She began to share their journey, from dances and story times to new wheelchairs and fundraisers, on her Instagram.
In a blur, Chuck's journey ended. He passed away in April, less than two years after his ALS battle began.
"We were about to go to bed one night and you can just see it in his eyes, something happened, and within a minute his eyes were closed," Nicole said, "They were like, oh no, he has time, like, you can enter a clinical trial up to two years post diagnosis. Well, he's gone 14 months post diagnosis so, never enough time."
Now, Nicole can confide in Nancy. Both women are all too familiar with their hard path. While ALS awareness has surged and there are several drugs approved to slow the progression of the disease in some patients, both Nicole and Nancy say there are gaps in care for these patients.
"I was told once that if I wanted coverage for Pete's care that we could put him in a nursing home and that would be covered and he was 30 years old," Frates said, "I thought to myself what is wrong with us. What is wrong with us as a society?"
Helping other ALS patients
To this day, most of the financial burden of at home care for ALS patients falls on their loved ones. Nicole says there are also long wait times for much needed equipment like wheelchairs.
"In my way to give back I'd also like to come up with some sort of guidelines or one page cheat sheet on what to do when you get a diagnosis or what to do at this stage of progression," Nicole said, "Chatting with people who have already been through this journey and understand it has been incredibly helpful and I'd like to be that resource."
To learn more about Nicole and Chuck's journey and ALS, visit makewayforchucklings.com and petefrates.com.
