The Critical Role of Care for People Living with ALS


The ALS Association collaborates with some of the best ALS physicians and clinics across the United States to help ensure that people living with ALS have access to the specialized care they need, based on best practices. Disrupted by the pandemic this year and the ability to see patients in person due to quarantines and safety issues, providing care in a clinic setting took on the challenges of major change, but ALS doesn’t stop and neither do we.

When the Centers for Medicare and Medicaid Services moved to expand access to telehealth services earlier this year – a response to the social distancing put into place during the early days of the COVID-19 outbreak – it marked a significant step forward in the use of digital technology to deliver health care.

In response to these challenges, 100% of our 73 Certified and 22 Recognized clinics transitioned into providing care through telehealth to ensure patients continued to have access to the support of their ALS medical professionals while staying safe. Chapter liaisons continued to remain involved as members of the clinic teams providing support during and in-between clinic visits. Currently, 17 clinics are in the process moving toward certification/recognition with additional clinics communicating interest in becoming part of the program.

Virtual technologies provided opportunities to help families affected by ALS, not only receiving healthcare via telehealth, but also the many services our local chapters normally furnished every day. Support groups and in-home visits quickly transitioned into online support groups and virtual home visits, enabling chapter staff to continue to interact with families, providing critical education, care, and resources they needed while keeping them safe in their home environments and reducing the need and cost of travel. A win-win.

Now, as the country continues to re-open in the wake of this “new normal,” families affected by ALS remain in a difficult situation as the risk of getting COVID-19 persists. “The threat of the virus to a vulnerable population such as those living with ALS remains and may possibly continue for the next year or even two so we need to keep this population safe,” says Marianne Keuhn, Vice President of Care Services for the ALS Association Minnesota/North Dakota/South Dakota Chapter. “We’ve been thrust into the biggest research project, one we certainly never planned for.” 

The care services teams around the country in local chapters of The ALS Association continue to adapt and expand services to ensure the safety of the ALS community every day and we are all grateful to have your ongoing support to ensure that we will continue to meet the mandate of our mission, even in these continued uncertain and unprecedented times. 

Learn more about our network of multidisciplinary clinics here.

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