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Friday, May 15, 2020

Navigating ALS During the Pandemic


May is ALS Awareness Month, an opportunity to shine a light on a rare but devastating disease that wreaks havoc on a new family every 90 minutes.

ALS is a progressive neurological disease that affects the nerve cells in the brain and spinal cord. As the disease progresses, people lose the ability to control their muscles – losing the ability to walk, to talk, and eventually to breathe. It is always fatal, usually within 5 years of diagnosis. The average age of diagnosis is 55, and veterans are more likely to be diagnosed with ALS than people with no military background. There is no cure. And for a socially-isolating disease that also leads to life-threatening respiratory issues, the COVID-19 pandemic exacerbates existing anxieties and mortality fears.

Because of the debilitating nature of ALS, people lose the ability to continue working, compounding the severe financial impact of living with the disease, which generally requires assistive technology like ventilators and feeding tubes, along with in-home health care. It is estimated to cost more than $250,000 a year to care for someone living with ALS, particularly in the later stages of the disease. Caregivers – typically spouses and family members – take on a heavy emotional toll, often while acting as the sole breadwinner. Caregivers can spend up to 11 hours per day providing care. People who experience “caregiver strain” have a 63 percent higher mortality rate, more than half of caregivers face higher levels of financial strain, and 67 percent of caregivers say that providing care is emotionally stressful. Children in families living with ALS also take on caregiver roles and often are forced to put their own futures on hold while caring for parents and grandparents and dealing with the devastating financial impact.

ALS was first discovered in 1869 by Jean-Martin Charcot, a French neurologist. There are two types of ALS – familial ALS, which is inherited, and sporadic ALS, which accounts for 90 – 95 percent of all ALS cases and can affect anyone at any time. It rose to international prominence in 1939 when Lou Gehrig, a renowned baseball player with the New York Yankees, disclosed his diagnosis in a famous July 4 retirement speech during which he declared himself to be “the luckiest man on the face of the Earth.”

Seventy-five years later, during the summer of 2014, ALS would again become internationally recognized when The ALS Ice Bucket Challenge took the world by storm. More than 17 million people around the world took the Challenge bringing unprecedented awareness to the disease and changing the future of ALS forever. The ALS Association received $115 million in donations during the Challenge, and the ALS community has seen unprecedented progress towards therapies and a cure in the years since.


While the causes of ALS remain unknown, researchers have identified several new genes connected to the disease since the Ice Bucket Challenge. Clinical trial enrollment has been at an all-time high, and new treatments continue to move through the drug development pipeline. While the momentum in the fight is tangible, the fact remains that the estimated cost to develop a drug that can slow or stop disease progression is between $2-3 billion. To put that into perspective, The ALS Association has committed $110 million to research into treatments since the Ice Bucket Challenge.

In addition to advances in therapeutic interventions, the ALS community has seen expanded access to high-quality clinical care in recent years. Research has shown that multidisciplinary care that brings together specialists – including, but not limited to, respiratory therapists, neurologists, mental health therapists, physical therapists, occupational therapists, and nutritionists – can enhance and extend lives. In the past five years, The ALS Association has more than doubled its network of multidisciplinary care centers.

Moreover, a nationwide network of advocates and partners has expanded federal funding for ALS research at the National Institutes of Health (NIH), the Department of Defense, and the Centers for Disease Control (CDC), while also fighting for immediate access to Social Security benefits and fighting against policies that make it harder for people with ALS to access the technology and health care they need, like noninvasive ventilators.

While researchers are on the verge of changing the future of ALS, much work remains. The COVID-19 pandemic has created real challenges to delivering The ALS Association’s extensive care programs and services, which are traditionally in-person and tactile. Since the pandemic, the Association has been working around the clock to modify those programs, including support groups and home visits for online platforms. At the same time, the Association is working with its nationwide chapter network to modify its signature Walk to Defeat ALS awareness and fundraising events for virtual participation or participation in other social distance-friendly formats.

To learn more about the mission of the ALS Association and how you can help expand its critical care services to accommodate extraordinary need during the pandemic, follow us on Facebook and Twitter at @alsassociation, on Instagram at @als, on our blog, and on our weekly podcasts.

Jeremy Holden is The ALS Association’s Communications Director, where he is responsible for sharing and elevating the stories of people living courageously with ALS and the community fighting the disease.

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