The time after receiving any serious diagnosis can be difficult, but its particularly true in the case of amyotrophic lateral sclerosis (ALS). The days and months after someone learns they have ALS are full of big challenges – primarily that anyone facing ALS will become less and less able to care for themselves, in some cases very quickly. This means it is all the more important to find help, and find it soon.
For many people, it can be difficult to know where to turn for help. Luckily, there are many individuals and organizations out there to help people navigate the difficult days, weeks, months, and even years after receiving an ALS diagnosis. Our friend Chris Curtin is one of those people ready to help.
Chris began his journey with ALS in 2004, when a close childhood friend, Claire Gormley Collier, was diagnosed with the disease. He began helping her raise money and awareness about ALS. He saw firsthand, as her disease progressed, the many ways in which she needed support – and made it his mission to provide it.
“Claire's goals with ALS was to be at home, not be put in a nursing home, and to live her best life,” he remembers. “And that's what we did for her. We were able to renovate her home to make it handicap accessible, we were able to get a wheelchair accessible van, put a ramp in her house, and redo the bathrooms to make them handicapped accessible.”
Sadly, Claire passed away in 2009, but by that point helping people with ALS had become a full-time calling for Chris. He served on the board of a foundation started in her memory by her friends and family, MAC Angels, eventually becoming the Director of Services so he could work directly to help people living with ALS. Today, Chris works for Compassionate Care ALS (CCALS), an organization based in Massachusetts that works to provide essential services for people living with ALS, primarily in the Northeast.
Now he manages cases that are directed to him from many places – people referred to him from hospitals like the Columbia ALS Center, Mass General Hospital, or hospices, or even from family members who have learned about CCALS online. Having dealt with helping people with ALS for so long, Chris has learned a lot about how to navigate the many challenges that come with it – experience he works hard to impart on everyone he advises.
“With all my years of experience, I know what they need and I know how to kind of navigate what's covered by insurance and what's not covered by insurance” he says. “For example, with the Permobil power chair, the seat elevator is not covered by insurance. It's a $1500 out of pocket cost. But what people don't know is that you can apply for a grant from Team Gleason, or you can apply for a grant from the manufacturer. It's just all those ins and outs.”
The list of things Chris advises his clients about is long. For example, there are the younger people diagnosed with ALS that don’t realize they’re eligible for Medicare if they need to stop working. He helps people who need in-home care figure out what kind of equipment their insurance will pay for. He tells people about the devices they might need to help them live independently – things like noninvasive ventilators with cough assist, feeding tubes, and electric wheelchairs. For people who can’t afford some expensive items, he will try to arrange for equipment to be loaned. He will even drive his clients to their appointments if they can’t get there themselves – and advocates to make sure they’re receiving proper treatment if he feels that the facility is not properly handling their case.
One important thing Chris also encourages his clients to do is reach out to other organizations that offer help for people living with ALS. In the case of the ALS Therapy Development Institute (ALS TDI), he tells them to enroll in our Precision Medicine Program(PMP) in order to help track their disease progression. He also recommends people looking to support advocacy to check out I Am ALS, and to seek out help from other groups that provide patient services groups like the Muscular Dystrophy Association (MDA).
“I always say to people it's not the community you wish to be in,” he says. “But when you get in the community, it's a community of really, really awesome people. ALS does not discriminate. It does not matter what your skin color is, it doesn't care whether you're male or female, and it doesn't care what age you are. It affects everybody. My youngest patient was 14 and my oldest was 90 when they got their diagnoses. So, I've seen everything from A to Z.”
For more information and to get in touch with Chris Curtin and CCALS, click here. To learn more about ALS TDI’s research to end ALS, click here.