No doubt, this is a May like no other. But at the same time, the world continues, and as we mark May as ALS Awareness Month, we take this opportunity to remind our larger community what our ALS community knows all too well: that even with all the uncertainty and unrest caused by COVID-19, ALS doesn’t stop, and neither do we as we work to support our ALS community as they face new and existing challenges.
Because of the need for extreme social distancing during this pandemic, people with ALS and their caregivers have no choice but to take extraordinary precautions and isolate themselves nearly completely. This means they are at risk of losing access to services that are traditionally delivered in person at their homes or in a clinic. Our Care Service team has been working to bridge this connection gap by reaching out by phone and video conference, and by ensuring people with ALS have access to their clinic staff in whatever way makes sense for them. Even as we have been working remotely, our staff has been in constant collaboration around how to best serve our community and how we can prepare for the time when can once again gather together.
But even though we are still mostly at home, you don’t have it sit this ALS Awareness Month out. There are many way you can have an impact on our fight to end ALS.
May 16 is ALS Youth Action Day, a day on which we highlight the difference young people can make in the fight against ALS. Because of COVID-19, ALS Youth Action Day will look a little different this year, but you can still write letters, tell stories about your ALS hero, spread awareness through your social media accounts, or host a creative virtual event. By participating in ALS Youth Action Day, you’ll be showing the world that ALS needs to be cured. Visit the ALS Association Youth Action Day site to find out more about how you can participate, and make a difference.
And June will be here before we know it, and our staff is working hard to finalize plan for the 2020 St. Louis Walk to Defeat ALS. We are monitoring the current situation and are continually evaluating the event. We know the Walk will look different this year, so please watch your email and join us on the Walk to Defeat ALS- St. Louis Regional Chapter Facebook page for a Facebook LIVE update on Friday, May 15, at 12 p.m.!
The work of advocating for people with ALS does not stop just because we are socially distanced. While the ALS Community won’t be able to gather in person for the ALS Advocacy Conference later this month, you can all join us virtually. And we are already preparing to meet virtually with our legislators to urge them to support people with ALS for our virtual Capitol Hill Day in early June. You can help by signing up and becoming an advocate today.
Many of you have already taken the opportunity to support people with ALS, their families, and care givers, by donating on Giving Tuesday or Give STL Day. Thank you to everyone who made a difference during these challenging times. Throughout ALS Awareness Month, we are encouraging everyone to be the light that shines on someone living with ALS. Your support allows us to provide the care and services our ALS community needs right now to face the obstacles created by COVID-19, as well as the day-in, day-out obstacles created by ALS.
ALS doesn’t stop. And neither do we, even during the strangest ALS Awareness Month ever. Stay safe.