How to Get Involved With ALS Awareness

Amyotrophic lateral sclerosis (ALS) is a devastating disease that greatly impacts those with the condition, their caregivers and loved ones, and our society. Once diagnosed, the life expectancy for ALS is just two to five years.

Bringing awareness to ALS, not only to make life easier for those living with the disease, but to raise funds and move toward a cure is imperative.

In this article, learn more about ALS and how you can help bring awareness to this disease.

Facts About ALS

ALS is a severe neurodegenerative disease that attacks the nerve cells that control muscles. Gradually, a person with ALS becomes paralyzed, which leads to significant disability and eventually death.

People with ALS may not be able to move, communicate, eat, swallow, or function as they used to, but they can still think, hear, and see. There are many assistive devices and therapies to help people with ALS adapt to life with their disabilities and maintain communication and independence for as long as possible. However, there is currently no cure for this fatal condition.

About 30,000 people in the United States currently have ALS. About 5,000 new cases are diagnosed each year. ALS can affect anyone but is more commonly diagnosed in non-Hispanic White populations, men, people older than 60, and those with a family history of the disease.

The History of ALS Awareness

ALS was first identified in 1869, but the public became much more aware of ALS in 1941 when Lou Gehrig, a famous baseball player, had to retire from the New York Yankees due to the effects of the disease. "Lou Gehrig's disease" became synonymous with ALS.

Dr. Stephen Hawking is another public figure who increased ALS awareness. Hawking was a physicist who was diagnosed with ALS in 1963. He defied the odds and lived 55 more years with ALS, all while studying black holes, writing best-selling books, having an award-winning movie made about his life, and continuing to raise ALS awareness.

ALS Awareness Month

ALS awareness month is in May. The ALS Association and other national and local ALS charities host and encourage events and fundraisers throughout May to raise funds and awareness for ALS.

The Ice Bucket Challenge

The ALS Ice Bucket Challenge was a one-of-a-kind viral social media sensation that has since led to significant advancement in ALS research.

In July 2014, professional golfer Chris Kennedy made a video of pouring an ice bucket over his head while stating he would donate to ALS research. He passed the challenge along, and it caught on in social media like wildfire from there. Celebrities, politicians, and people worldwide began participating in the challenge.

The Ice Bucket Challenge has its critics. Some have called it "lazy activism," and many videos of people taking the ice bucket challenge did not even mention ALS. Others argue that sitting "paralyzed" while ice water gets poured over your head is inherently offensive to people with ALS.

However, the stunning result was that this viral movement raised $115 million and increased the ALS Association's annual fundraising by 187%. In 2019, a report revealed that this money directly led to a significant advancement in research on genes tied to ALS.

Ways to Raise Awareness All Year Long

Below are examples of ways to raise ALS awareness throughout the year.

Educate Your Friends and Family

One of the best ways to raise ALS awareness is through word of mouth to your friends and family. Many people have heard of ALS but may not know the details of the disease, like its life expectancy, early warning signs, how it's diagnosed, symptoms, treatment, or what it's like to care for someone with ALS.

The more people understand about the impacts of ALS, the more support the disease may get and the closer scientists can come to a cure.

Connect on Social Media

You may think posting about ALS on social media won't make a difference. However, the unprecedented 2014 Ice Bucket Challenge shows that even one small video can make a huge difference.

Share Your Experiences

As important as knowing the facts about ALS, many people connect more deeply to personal stories. If you have an experience to share—whether you're living with ALS, caring for someone with ALS, or have been affected by ALS—it may benefit others. This could be through one-on-one conversations, social media, videos, artwork, a blog, or more.

Become an Advocate

Whether standing up for a friend or family member with ALS or petitioning the government, there are many ways to advocate for ALS.

Through the ALS Association, you can register for the Advocacy Action Center. As a registered ALS advocate, you will have easy access to sign your name to ongoing petitions, write letters to your representatives about suggested issues, and more.

Stay Up to Date With the Latest News

ALS News Today is a good resource for ALS news. They share breaking news on Food and Drug Administration (FDA) approval stages for ALS therapeutics and ongoing clinical trials. The website also shares blog posts from people living with ALS.

Donate

When you donate to ALS charities, you support research for a future cure for ALS and therapies for people currently living with ALS. Depending on what organization you contribute to, your donation may also be tax deductible.

Volunteer

Donating your time can be as valuable as making a financial contribution. Consider volunteering with your local ALS Association chapter or another local charity. There are many ways to help, whether volunteering directly with people living with ALS (such as assisting with community transportation, meal preparation, or caregiving) or volunteering at fundraising events.

Participate in an Event or Challenge

While the Ice Bucket Challenge may be over, you can get involved in many other events.

Some ALS events and challenges to join include:

• Walk to Defeat ALS team: Fundraise with a network of teams operated by the ALS Association by participating in an annual walk to support research initiatives.
• Team Challenge ALS: Participate in endurance events, such as marathons or ski races, all while fundraising for the ALS Association.
• Distinguished Events: The ALS Association runs special events, such as golf competitions, galas, and even local "CEO soaks." Contact your local ALS Association chapter to find out about events.
• Fundraise: There are many other worthy ALS charities to support outside the ALS Association. You may fundraise for them and raise ALS awareness through a bake sale, athletic event, concert, trivia night, or raffle.

ALS Organizations to Support

The ALS Association is the largest national nonprofit for ALS awareness, support, and help to find a cure.

They have a national network of local support groups, fund ground-breaking international research projects, lobby for ALS within the government, operate clinical care centers, and more.

Other ALS organizations to support include:

• ALS Worldwide
• Answer ALS
• ALS Therapy Development Institute
• I AM ALS
• The Les Turner ALS Foundation
• Target ALS
• Susan Mast ALS Foundation
• MOFF Foundation
• Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe)
• Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS)
• Muscular Dystrophy Association - ALS

Summary

ALS is a fatal neurodegenerative condition with a life expectancy of two to five years from diagnosis. Finding a cure for this disease is essential, and raising ALS awareness can make a big difference.

From Lou Gehrig to Stephen Hawking to the Ice Bucket Challenge, raising public awareness can lead to advancements in treatments, research, and movement toward a cure.