The ALS Association

2020 Mid-Year Report

While much of the world paused to quarantine during the first half of the year, ALS did not stop for COVID-19. Neither did The ALS Association. Our commitment to building a world without ALS only intensified as the needs of the community we serve became more pressing in the face of a global pandemic. From funding cutting-edge new research projects, to finding new ways to provide patient care, and to our advocacy for better public policies, our response to COVID-19 has been simple: We can’t wait until this is over to continue our fight.

We Can't Wait to Find Better Treatments and a Cure

Our work funding research around the world did not stop in the face of the pandemic. Since January 1, The ALS Association has committed over $13 million to fund 44 research projects around the world. Here are a few examples of advancements in our research program.

Our research funding includes a $3 million commitment to help set up the first-ever ALS platform trial at the Sean M. Healey & AMG Center for ALS. The Healey Platform Trial is already enrolling trial participants. Learn more about how this successful research model is advancing the search for treatments.
We also launched a partnership with I AM ALS to fund research into biomarkers utilizing BrainStorm’s ongoing phase 3 clinical trial of its NurOwn treatment.
Our partner, Biogen, recently published promising results from its phase 1–2 Trial of Antisense Oligonucleotide Tofersen for SOD1 ALS and is now actively enrolling participants for their Phase 3 Valor study. It also announced that there is an open-label extension available in the study.

We Can't Wait to Help People Impacted By ALS Today

In response to COVID-19, 100% of our multidisciplinary care 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. Liaisons from our nationwide network of ALS Association chapters 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. Learn more about our network of multidisciplinary clinics.
Our ALS community did not stop fighting for federal funding for ALS research and making sure people with ALS do not lose access to the technology that enhances their lives. When COVID shut down in-person meetings with members of Congress, our advocates quickly shifted gears and moved our advocacy work online. During our virtual advocacy conference in May, our advocates held more than 350 virtual meetings with members of Congress.
Our ALS community led the fight to expand access to telehealth and make sure that people with ALS did not lose access to ventilators as part of COVID-19 relief packages and will continue to fight to make sure access to telehealth and noninvasive ventilators expands in the future.
We continued to make sure that kids impacted by ALS are able to continue their education. This year The ALS Association awarded $470,000 in scholarships to 94 students for the 2020 school year through The Jane Calmes ALS Scholarship Fund.

We Can't Wait to Hear Directly from Our Community

This year, The ALS Association launched the ALS Focus survey to hear directly from people living with ALS and their caregivers. The first survey focused on understanding the insurance needs and financial burden of people living with ALS. Read more about the devastating financial impact of ALS – and how to get involved in the next survey, which is already recruiting participants

We also launched a weekly podcast, Connecting ALS, to talk directly to our community and to elevate the stories of the people living with ALS and those working tirelessly to find treatments and cure, and to help enhance the quality of life for people living with the disease today. The podcast already routinely ranks high among health care podcasts.

We Can't Wait to Bring the Fight to Your Community

Our nationwide network of chapters has continued to provide local support and care for families affected by ALS, modifying programs and services to virtual platforms free of exposure to the coronavirus wherever possible, including virtual check-ins and home visits by The ALS Association care services staff. Chapters also maintained delivery of critical programs - durable medical loan equipment, respite care, and caregiver support -- and creatively found ways to expand their programs safely. Some examples include:

Ionis Pharmaceuticals established a $25,0000 scholarship to help people with ALS in and around San Diego access mental and physical wellness programs.

The ALS Association Northern New England Chapter moved its day-long ALS Family Caregiver Lab, which teaches caregivers how to use specialized equipment, to a virtual learning lab.

The ALS Association Rhode Island Chapter is supporting cutting edge research developing technologies to help people living with ALS communicate using brain signals.

The Walk to Defeat ALS® also went virtual as the spread of the coronavirus and critical need for social distancing continued through the spring. Walk leaders in cities like Chicago and St. Louis transformed their annual community celebrations into fun, friendly experiences online using social media, encouraging participants to create their own event by walking or riding in their own neighborhoods to protect everyone’s health and safety. These events will continue through the fall around the country, enabling our ALS communities to continue to come together, spread awareness of the disease and celebrate their loved ones, both past and present.

Watch: Walk Your Way

None of these advancements would be possible without the generous support of our donors and partners. To learn more about the work of The ALS Association and why we can't wait to find a cure, visit alscantwait.org.