Amyotrophic lateral sclerosis (ALS) is the most common type of motor neuron disease, attacking the nerve cells that control muscles and ultimately paralyzing all voluntary muscles. Every 90 minutes someone is diagnosed with or passes away from ALS, as this disease is progressive and fatal 100% of the time. Fortunately, we have a month-long movement fighting to catalyze change and seek desperately needed cures. So, we had to ask: What is the most important information you need to know about this year’s ALS Awareness Month?

👉 Official Name: ALS Awareness Month
💚 Cause: Spread awareness of and raise funds for research into cures for ALS
📅 Next Date: May 1-31, 2027
🐦 Hashtag: #ALSAwarenessMonth

Keep reading to find out all the important information about ALS Awareness Month at a glance: its big picture, why it’s important, and how you can get involved. We’ll then share its brief history, three interesting facts about it, its future dates, and how you’ll never miss any important awareness event again.

The Most Important Information About ALS Awareness Month at a Glance

1️⃣ The big picture: ALS Awareness Month is a collaborative effort to spread awareness of ALS and the vital need for research into treatments. It is estimated that by 2040, ALS incidence will increase worldwide by 70%, so this yearly observance is critical to accelerating more effective treatments and prevention methods so that the future is brighter than this prediction. As a result, this event initiates diverse fundraising events, political marches, and online awareness campaigns to boost help for patients worldwide. 

2️⃣ Why it is important: About 5,600 Americans are diagnosed with ALS each year, and the life expectancy of patients is about two to five years from the time of diagnosis. As there is currently no cure, ALS is always fatal, causing nearly two deaths per 100,000 people annually. Moreover, 90% of cases occur with no family history or other clear causes, although veterans have two times the risk of developing the disease. In addition to muscle weakness, up to 50% of patients with ALS also struggle with changes in cognition and behavior, similar to dementia. 

3️⃣ How you can get involved: During ALS Awareness Month, you can serve the ALS community to improve their daily lives, help advance research, or promote awareness of the disease:

1. Asist Patients: A great way to celebrate this event is to offer direct care to the ALS community to increase support, safety, and hope. You can do this by volunteering for nonprofits or community centers that aid ALS patients. You can also try connecting with a patient, caregiver, or family that needs support. 
2. Support Research: As ALS patients urgently need effective treatments, you can fundraise for organizations dedicated to advancing research, join their fundraising events, or find time to volunteer during this month. Involve friends and family too, for more impactful and fun fundraisers.
3. Raise Awareness Online: Advocate for cures or share your volunteering or fundraising experiences online to encourage more people to participate in this event, using the hashtag #ALSAwarenessMonth. If you are a patient, join the #ALSLooksLikeMe campaign to spread awareness that ALS can impact anyone and no two cases are exactly the same.

Below are our favorite charities that are relevant for ALS Awareness Month:

• I AM ALS
• Les Turner ALS Foundation
• ALS Therapy Development Institute
• Team Gleason Foundation
• Compassionate Care ALS
• Answer ALS
• ALS United Greater New York
• ALS Canada

A Brief History of ALS Awareness Month

When was this event established: ALS Awareness Month was established in 1990 when the Canadian Minister of Health asked the ALS Society of Canada to dedicate one month to raising awareness of ALS. As Lou Gehrig, the New York Yankees first baseman who famously had ALS (also named Lou Gehrig’s disease) died in June, they designated the month of June for this event. Furthermore, in 1992, the US Congress declared May to be the national ALS awareness month to help spotlight the tremendous challenges being faced by individuals living with this disease.

How has it developed since then: Today, ALS Awareness Month is an international movement accelerating global research for treatments and cures for the fatal disease. For example, in the US, the ALS Association holds the National ALS Advocacy Day and Public Policy Conference, leading a delegation of ALS patients and advocates to Capitol Hill to urge legislators to support measures for cures. In addition, the Centers for Disease Control and Prevention holds campaigns to connect patients with their National ALS Registry to help scientists learn more about who gets ALS, its potential causes, and better treatments.

3 Interesting Facts About ALS Awareness Month

1. A Symbol of Strength: Blue cornflowers are an international symbol of ALS. Neurologist Richard Bedlack explained “Like patients with ALS, they look fragile, but they are surprisingly strong. They can maintain their beautiful blue color even through the harshest winters.” As the cornflower stands up to all the elements of nature, ALS patients show remarkable courage and strength in coping with devastating symptoms.
2. Special Campaigns for Patients: In 2011, the Muscular Dystrophy Association launched, during ALS Awareness Month, the online series “ALS: Anyone’s Life Story”, profiling every day an individual living with ALS – with 31 honorees from 20 states. In addition, since 2007, the ALS Cup for a Cure soccer tournament has raised funds to advance research and support affected families. 
3. A Brief History: Descriptions of the disease date back to at least 1824, made by Charles Bell. In 1869, the link between the symptoms and the underlying neurological problems was first explained by French neurologist Jean-Martin Charcot, who, in 1874, began using the term ‘amyotrophic lateral sclerosis’.

Upcoming Dates of ALS Awareness Month

ALS Awareness Month is observed every year for the entire month of May.

Never Miss an Awareness Event Again

Sources

• MSD Manuals: Amyotrophic Lateral Sclerosis (ALS)
• Wayback Machine: Muscular Dystrophy Association: 20th Anniversary of ALS Awareness Month: MDA to Honor 31 Americans
• Michigan Medicine – University of Michigan: Fast Facts: Amyotrophic Lateral Sclerosis (ALS)
• Michigan Medicine – University of Michigan: 10 Key Facts About ALS
• Wikipedia: ALS Awareness Month
• Michigan Medicine – University of Michigan: ALS Facts and Figures
• The ALS Association: Facts You Should Know About ALS
• National Library of Medicine: Amyotrophic Lateral Sclerosis (ALS)
• Wikipedia: ALS
• I AM ALS: Understanding Veterans’ Risk for ALS
• Neurology: ALS-specific cognitive and behavior changes associated with advancing disease stage in ALS
• The ALS Therapy Development Institute: ALS Looks Like Me
• Wayback Machine: ALS Canada: June brings about another ALS awareness month
• ALS Association: home page
• Agency for Toxic Substances and Disease Registry: May is ALS Awareness Month
• Centers for Disease Control and Prevention: ALS
• ALS Society of Manitoba: Cornflower: Symbol of Hope
• Duke Heath: A symbol of hope for ALS
• Pipestone Star: “ALS: Anyone’s Life Story”
• Cup for a Cure: about us