ALS Awareness Month: How our fight continues

2020 ALS Awareness Month

May is ALS Awareness Month. Of course, this year is different than past years as the world has changed significantly in the face of a global pandemic. However, ALS doesn’t stop and neither will we. During the month of May we have a full calendar to increase awareness of ALS and of the severe physical, emotional, and financial burdens it creates for people living with the disease and their families. We’ll be talking about the disease and its burdens in the context of the COVID-19 public health crisis, which exacerbates the difficulties people living with ALS already face in number.

Because of their vulnerability to the disease, people living with ALS and their caregivers are practicing extreme social distancing, living in isolation, and unable to access traditional care and resources. Since the pandemic reached the United States, The ALS Association has been working around the clock to adapt essential care services to virtual and online platforms, and advocating tirelessly in Washington, D.C., to make sure those living with ALS are not left behind as important stimulus packages and other legislation are being considered.

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. 

We have a lot of information and opportunities to share in the weeks ahead, including our celebrations of #GivingTuesdayNow on May 5, ALS Youth Action Day on May 16, Mothers Day, and Memorial Day. We also invite you to a series of webinars around ALS Advocacy and our June 2 Virtual Hill Day.

Please continue to follow our blog, our social media and our podcast, Connecting ALS, throughout the month of May so you don’t miss our activities and information.

Pandemic or not, we’re committed to ending ALS. We’re all in this fight together.


Submitted by: Alice C. on Tue, 01/11/2022

Hello! My name is Alice and my coworker's husband was recently diagnosed with ALS. I am trying to raise awareness at my job about the disease and help raise for the medical expenses.

Submitted by: Amy L. on Tue, 01/11/2022

Alice, my heart goes out to your coworker and their husband. You might be interested in this page, which lists some ways you can get involved with The ALS Association:

Submitted by: Mary Jo D. on Mon, 05/01/2023

I lost my husband to ALS 12 years ago in July. The MDA Association was invaluable to me. They provided equipment, voice computers, specific designed wheelchair for him and much more. Tell your friend to contact the Muscular Dystrophy Association in Louisiana. She will be blessed with all they offer. They help with any neuromuscular disease. I will be praying ??

Submitted by: Lorraine D. on Sat, 04/30/2022

Have an Uncle by marriage that's hitting a curve where he almost needs feeding. On the OTHER side of my by blood was my great-uncle Edgar who died very young , must have been under 30yo. My father was named Edgar in his memory, so I'm seeing this family wise.

Submitted by: Edward S. on Tue, 05/24/2022

My brother was formally diagnosed at 37 and lived a long, productive and hard but joyful life till age 60 with an absolute angel of wife as his primary-giver. He’d been full physically incapacitated for about 15 years, on a feeding-tube, but still managed to communicate with and know tens of thousands around the globe who followed his blog at He was set-free of his ALS-imperiled body Dec. ‘20.

Submitted by: Jodi B. on Wed, 06/22/2022

My dear brother Brian had experienced so much the couple years of his life he was first diagnosed with cancer and fought through to beat his cancer only to be diagnosed with ALS in January of 2021 he was strong and courageous but lost his battle only about one year after being diagnosed He fought until he couldn’t anymore he is missed and loved always I did want to say there is the Steve Gleason foundation that may be able to help for those in need of medical equipment etc God bless to those diagnosed and their families

Submitted by: justin S. on Mon, 09/12/2022

just curious as to why im seeing two different colors representing ALS awareness and can anybody tell me what the true awareness color is

Submitted by: Lara C. on Tue, 09/27/2022

I lost my husband 02/05/18. I got his diagnosis after he was in a coma. He went to the hospital 02/22/18.

Submitted by: Jonathan H. on Mon, 11/14/2022

My dad passed away from ALS a little over 15 years ago. I was 14 at the time. Very grateful for the values he instilled in me, and I still think about his all the time! I have started an ALS related brand and want to come out with awesome apperal starting with hats that will spread awareness. Would love to find away to eventualluy work together in any way! Thank you for all you guys do.

Submitted by: Tia D. on Mon, 05/01/2023

In honor of my mom-in-law who fought #ALS with grace and grit.

Submitted by: Wendy P. on Tue, 05/07/2024

My husband Guy fought the fight for a year, and lost his battle on 12/7/09. The ALS association provided great support and comfort for not only Guy, but our entire family.
The monster needs to be stopped. We will keep fighting.

Submitted by: Stephanie O. on Thu, 05/16/2024

Our hearts are with you, Wendy. Thank you for continuing to fight the monster that is ALS.

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