What a Year It Has Been

There is no doubt, 2020 will be a year not soon forgotten. We all have had our lives turned upside down in ways big and small, and we are all hoping for 2021 to turn things right-side up.

And while 2020 has been for many a year we’d be fine forgetting, there has been much worth remembering for our Chapter and the ALS community. For while 2020 has been a struggle, we are inspired by those who have struggled to overcome the obstacles in the path. And we are reminded that for people with ALS the struggle never ends. ALS does not stop for global pandemics, or for the challenges created by them.

Like so many others, when the scope of the COVID-19 pandemic became clear, our Chapter was forced to reimagine how to provide services to the community we serve. Our Care Service team worked with our partners to find new and different ways to meet the needs of people with ALS. Visits that would normally have been in person now took place over the phone or internet. Here on ALS Connect, we tried to keep you informed about how we and others in our community we meeting these challenges each and every day.

As we all tried to settle in to the new normal of 2020, we were faced with finding a way to hold our ALS Walks to Defeat ALS when we could not all gather and walk together. So this year, we brought the walk to you through Walk Your Way events in St. Louis and Springfield, allowing you to spread ALS awareness in new and different ways. Our other fundraising events in 2020 had to change as well, as we continued to find new ways to come together while we were forced to be apart.

Indeed, being forced to function in a remote world has not stopped us from finding ways to make meaningful connections. This year, our Care Service team launched a virtual support group to bring people together to share personal experiences and feelings, coping strategies, and firsthand information. And in September our Chapter hosted a virtual town hall to share the latest in efforts around care services, advocacy and research. Members of our community were able to hear from experts in all these areas and ask question to the speakers.

There was in fact much exciting news to share. On the research front, the news of clinical trial results showing that Amylyx Pharmaceuticals’ AMX0035 brought statistically significant benefit to people living with ALS was a bright light in a dark year. Further results made an even stronger case for the effectiveness of AMX0035, and in hopes of bringing this promising treatment to as many people as soon as possible, The ALS Association and I AM ALS called on the drug company and the FDA to make the treatment widely available as soon as possible.

While the advocacy effort around AMX0035 is ongoing, ALS advocates scored a major victory earlier this month with the passage of the ALS Disability Insurance Access Act, waiving the five-month Social Security Disability Insurance (SSDI) waiting period before people living with ALS can access crucial benefits.

And as we prepare to enter 2021 it is with a mixture of sadness and excitement that we prepare for the retirement of our President and CEO Maureen Barber Hill in February. However, our Chapter will continue with stellar leadership as our Board of Directors announced in October that our current Director of Development Katie McGovern will become our new President and CEO upon Maureen’s retirement.

Time has a way of changing how we look at things, but 2020 certainly seems like it is destined to be a “do you remember when…” sort of year. And while it has certainly been a year of many challenges, it has also been a year of hope for many within the ALS community. As we enter 2021 thinking about vaccines and a return to something approaching normal, we also hope for more breakthroughs for people with ALS that move us closer to more effective treatments, and a cure. This year has been memorable, but perhaps 2021 will be even more memorable for better reasons. ALS does not stop, but with your help and support, neither do we—in 2020, 2021, and beyond.

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