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We know finding ways to optimize treatments and care, and increasing access to care, helps people with ALS live the way they want with a better quality of life. That’s where multidisciplinary care comes in. 

“A multidisciplinary clinic for someone who has ALS is a place where they can go and see all of the providers that are imperative in their care in one visit,” says Leslie Ryan, our Vice President of Community and Professional Education. “It's a one-stop shop where you're seeing all the experts who are managing your disease progress and providing treatment options and information about how to live with ALS.

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“So, one person, if they were going to see all these people, would probably be busy for a week, going to see different therapists in different buildings and getting testing done,” shared Dr. John Novak, Neurologist and ALS Clinic Medical Director at OhioHealth.

“Our team is pulled from home care. It's pulled from outpatient therapies. And they really all come together so that we don't have to send the patient to all these other places or even try to convince them to. On top of that, you know the patients have mobility problems. Getting out is hard.”

Expanding access to this type of specialized care is critical for people like Elizabeth Them.

Elizabeth, or “Biz” as she likes to be called, was born and raised in Ohio. Married now for 13 years, she has two wonderful stepdaughters, two dogs, and three alpacas. Yes, alpacas. After a trip to Peru, she thought they would be fun, but jokes they are “fun from afar,” admitting they’re really not that friendly.

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A physical therapist by trade, she knew about ALS, and it was always in her periphery. At the age of just 30, she noticed she was having weakness in her hands; something as easy as buttoning a pair of pants was becoming a chore. She was diagnosed with ALS in 2017.

Biz and her family are fortunate to have access to one of our ALS Certified Centers of Excellence™ nearby. “Being able to come here every three months and see every person I need saves me time, money. I mean, it makes it not only convenient, but enjoyable,” Biz shared in a recent interview. “I don't dread it. I don't love it, but I'm not dreading having another appointment. Coming here sitting in one room and they all come to me is the easiest for analysis.”

Since the ALS Ice Bucket Challenge, we have more than doubled our nationwide clinical network serving people living with ALS in their communities.

We’ve expanded from 100 Certified Treatment Centers of Excellence™, Recognized Treatment Centers™ and affiliated clinics before the Challenge to 226 today, and more than tripled our network of multidisciplinary clinics from 33 before the Challenge to 97 today.

It’s critical we ensure people living with ALS can find multidisciplinary care close to them. Our work to expand our nationwide clinic network is very intentional, focusing on increasing access and utilization of this type of care. Using geo-mapping, we are trying to ensure people living with ALS and their families are near a clinic.

Increasing access and use of telehealth is also a priority because of the challenges people living with ALS and their families experience in traveling and accessing multidisciplinary clinics. “I think telemed has been huge for this population and really was something limited to very few clinics prior to COVID,” says Dr. Novak.

Our new partnership with Synapticure, a leader in telemedicine focused on improving the lives of people and caregivers living with neurodegenerative diseases, will also help to expand access to quality care for people living with ALS across the US, regardless of their zip code.

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In addition, the need for in-home care has increased significantly while costs have skyrocketed. We are working with legislators on bills and regulations to improve the access and affordability of healthcare to ensure people living with ALS receive the crucial care they need and deserve. Our lobbying work to support the passage of the ALS Better Care Act is just one example of current legislation that will improve access to care for people living with ALS.

While much work is being done, to truly make ALS livable, we need to ensure everyone diagnosed with the disease has access to multidisciplinary ALS care, like Biz. We need to provide the critical resources, programs, and services they need to live their lives with ALS the way THEY want to.

We still need more care.

We still need a cure.

Let's See It End.

We're dedicated to providing people living with ALS and their families with the information, resources, and support they need free of charge. To learn more about the programs we offer, visit our website HERE.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.

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