Pandemic Moves ALS Awareness Month Events and Activities Online

ALS Awareness Month has been observed each May since 1992. But this year, the COVID-19 pandemic has forced supporters to rethink ways to raise funds and awareness for amyotrophic lateral sclerosis (ALS).

In previous years, May has been full of fundraising and educational activities such as outdoor bake sales, group walks and runs, golf tournaments, and in-person discussions and lectures. Because of the pandemic, however, and with most people staying at home and practicing social distancing, these events are being replaced, modified, or converted to online activities.

ALS patients are at high risk of contracting COVID-19 and experiencing complications. Those with respiratory muscle weakness are particularly susceptible. Across chronic diseases including ALS, the pandemic has compromised access to in-person care, creating additional burdens for patients and caregivers.

In the run-up to ALS Awareness Month, after COVID-19 was declared a global public health emergency, virtual events were becoming the norm. Last month, for example, Ionis Pharmaceuticals announced a scholarship that provides ALS patients with wellness programs that have moved online. Earlier this month, the Muscular Dystrophy Association (MDA) hosted a Facebook Live event about the pandemic and the ALS community.

Despite the outbreak, however, research and support are still needed for the roughly 5,000 U.S. residents, and between 5,760 and 6,400 individuals globally, who are diagnosed with the progressive neurodegenerative disorder annually. ALS Awareness Month remains of vital importance to the ALS community.

“The COVID-19 situation has certainly created new challenges, but ALS doesn’t stop, and neither can we,” Brian Frederick, senior vice president of the ALS Association (ALSA), said in a statement to ALS News Today.

“Our chapters have done an amazing job of continuing to provide support to people with ALS and their families virtually, in addition to finding creative ways to raise awareness and support online. We will continue to use ALS Awareness Month to call attention to the impact of COVID-19 on our community, while stressing the need to continue the urgent work of our mission. Especially this May, we’re all in this together,” he said.

The ALSA Western Pennsylvania Chapter, for example, is highlighting patients and caregivers this month on its blog, and is offering educational graphics and fact sheets that can be shared on social media.

“Throughout ALS Awareness Month, the ALS Association Western Pennsylvania Chapter will focus our attention on the impact that COVID-19 has on the ALS community, and remind the public that the temporary confinement, social isolation, and fear of tomorrow that our nation is experiencing during this trying time is the unfortunate daily reality for many of those who are living with ALS,” the chapter’s blog states.

The ALSA, which coordinates most national ALS Awareness Month events, is offering ways to spread ALS awareness while staying at home. The organization participated in #GivingTuesdayNow on May 5, a global day of helping and bringing communities together safely. On May 16, the ALSA will present a digital version of its Youth Action Day, an opportunity for young people to help increase support and awareness. The organization also is planning a series of webinars this month about ALS advocacy.

COVID-19 also has affected this year’s National ALS Advocacy Conference, which will take place virtually May 26–June 3, free of charge. Usually held in Washington D.C., the conference features a Virtual Hill Day on June 2, when advocates share the community’s needs and concerns with legislative staff members.

ALSA asks supporters this month to continue following its blog, Connecting ALS podcast, and its Facebook and Twitter platforms for ALS Awareness Month updates.

Activities elsewhere also have been affected by COVID-19. In Hawaii, for example, state and local government officials typically kick off ALS Awareness Month with a series of proclamations read in ceremonies attended by patients, their caregivers, and other stakeholders. This year, the ceremonies have been canceled or postponed.

Although it has altered this year’s Eat to Defeat ALS campaign to help support restaurants that are temporarily shuttered, ALS ONE is going forward this month with virtual Zoomba and Trivia Night fundraisers, profiles of patients, and ALS awareness Facebook frames.

Also this month, the organization presented a Social Distance Dash fundraiser in which participants could run or walk — not with others, but individually in their own locales. Likewise, the grassroots organization Ann Arbor Active Against ALS, which raises funds for ALS research, changed its ALS Awareness Walk 2020 to one in which participants can run or walk on their own this month.

Despite COVID-19, other organizations continue to step up. For May, the MDA has launched an awareness and emergency fundraising campaign that focuses on the importance of specialized care for ALS families. The fund will continue through the pandemic in support of the 43 neuromuscular disorders the organization covers.

The ALS Therapy Development Institute is sharing ALS narratives, facts, and the latest research, and is asking supporters to hold virtual fundraisers and to post their own images and stories.

Pharmaceutical company Amylyx is supporting the month with the launch of #INKEDforALS, a campaign that aims to raise ALS awareness and support, and spark conversations about ALS. The effort involves ordering a temporary tattoo, applying it, uploading a snapshot to the campaign photo gallery, and posting the photo on personal social media outlets. Amylyx then will donate to multiple ALS organizations.

As for the ALS Association, it is going forward, but still needs assistance.

“We are adapting and expanding services to ensure the safety of the ALS community every day and are grateful to have your ongoing support to ensure that we will continue to meet the mandate of our mission, even in these uncertain and unprecedented times,” the organization’s awareness month blog states. “Pandemic or not, we’re committed to ending ALS.”