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May Is ALS Awareness Month: Time To Advocate For People Living With ALS

8 min read
Published on 28 February, 2023

The human body is often said to be a work of miracles. The complexity of the different biological processes that undergo inside the human body is fascinating. Another beguiling yet concerning factor about the human body is the development of diseases.

The greatest minds in the medical science field have been working relentlessly to save mankind from diseases, and biological and genetic disorders. Humans have conquered numerous health issues till now.

Still, scientists are yet to discover a cure and treatment for several medical conditions.

ALS is one of the many medical disorders that needs tackling ASAP. It is a degenerative disorder that damages the neural motor system. The Centers for Disease Control states that approximately 5000 people in the United States are detected with ALS each year.

Surprisingly, there is no initiative till date to record the number of ALS cases in the US.

The positive element here is that numerous health organizations around the globe realize the urgency to shed light on ALS. With that thought in mind, they have designated May as the ALS awareness month.

At this point, you must be wondering, “what exactly is this ALS disorder, and should I be worried?” Worry not, as you have stumbled upon the right blog.

This blog explains ALS, the history behind ALS awareness month and its importance, why and how employers should observe this event at the workplace, and a few riveting facts about this medical condition.

What Is ALS?

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ALS stands for Amyotrophic Lateral Sclerosis. It is progressive and a type of motor neuron disease (MND). ALS is a condition that harms the nerve cells, which in turn affects the functionality of the hand and feet muscles at first.

The term “Amyotrophic” has a Greek origin. It can be broken down into three sections, A-Myo-Trophic. In Greek, “A,” which is used as a prefix, stands for “No.” The term “Myo” as a prefix means “muscle,” and “Trophic” is used as a suffix, which means “Nourishment.”

“Lateral” is used to describe the spinal cord region of the human body. And lastly, "Sclerosis" is used to define the formation of scarring and hardening of tissues.

The disease primarily damages the nerve cells of the brain and spinal cord, causing them to perish. With this, the muscles in both the upper and lower body lose control over their mobility. Over time, muscles weaken and lead to paralysis.

World-renowned British physicist Stephen Hawking had ALS.

The Story Behind ALS Awareness Month

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ALS awareness month came into being in the year 1985. A nonprofit organization, “the ALS Association,” took the initiative to observe ALS awareness month. Their fundamental goal then and now is to extend support and make the lives of ALS patients easier.

In addition to it, the association works to emphasize the necessity of finding a cure for this condition. Later in 1992, for the first time, the United States Senate passed a resolution assigning the month of May as National ALS awareness month or National Amyotrophic Lateral Sclerosis Awareness Month.

Since then, concerned groups have been organizing charity events and awareness campaigns in the month of May. According to the official website of the ALS organization, a rough estimate of 30,000 people in the United States are battling with ALS every year.

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The Need To Organize This Occasion

ALS, or Amyotrophic Lateral Sclerosis, is a rarely occurring yet not-so-uncommon disorder in the United States. It is one of the most challenging diseases for which scientists are still working to find a cure.

ALS is a progressive medical condition that advances more quickly than one can imagine. It is estimated that a person diagnosed with ALS may lose their life within a period of 5 years. Yet, there are cases where ALS patients are able to beat the odds and live longer.

Stephen Hawking, one of the most popular ALS patients, was told he had only 2 to live. But Hawking lived with the disorder for another 5 decades.

With ALS, the individual gradually suffers from muscle weakness and muscle atrophy and, in the end, loses the ability to function. ALS is commonly diagnosed between the age of 40 to 60 years but can develop earlier or later as well.

It is worthy of mention that the symptoms and progression of ALS differ from person to person. Although, eventually, ALS patients succumb to muscle weakness and full-body paralysis.

Another less talked about factor in this regard is how ALS impacts the patient’s family or caretaker. Battling ALS at the forefront is excruciating. At the same time, it also takes a severe toll on the family members.

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Considering all these aspects, organizations like the ALS Association, and the International Alliance of ALS/MND Associations developed. Hence, it is of utmost importance that ALS awareness month is observed to extend support to the survivors and educate the masses regarding it.

White and navy or blue pinstripes ribbon is used to depict ALS awareness month.

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Why Should Corporate Organizations Observe This Event?

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When it comes to creating public health awareness, the government arranges campaigns every now and then. The private sector organizations are also now catching up with this since corporate wellness has become an integral part of the corporate world.

Corporate leaders are proactively raising awareness regarding various health issues at their workplaces to promote employee wellness. If you are an employer or a corporate leader who is also interested in enhancing employee wellness, I urge you to observe ALS awareness month.

ALS is not to be taken lightly. Speaking from a personal perspective, people often begin to understand the value of such awareness campaigns when someone they know closely suffers from a severe health condition.

And as an optimistic person, I imagine a world where all people will one day support and help eradicate health issues selflessly. I believe if the government and corporate leaders continue to shed light on the issues like ALS from every angle, everyone will someday acknowledge its importance.

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How To Observe ALS Awareness Month In The Workplace?

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To make the best out of the ALS awareness month event in the workplace, here are some pointers for employers to follow.

1. Arrange engaging talk shows on the office campus

Realistically speaking, very few employees are seen to engage and take an interest in any awareness campaign held at the office. To make the event a success, give a thorough sweep through the ALS resources.

Organizing such an event means you have to know everything and anything about the issue. Reach out to a potential health expert or health organization with solid experience in handling ALS patients.

Pitch your event idea, share your vision, and invite them to enlighten your employees’ minds.

2. Host a charity funding event

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The concept of fundraising is age-old. It is said to be atleast 120 years old. As an employer, hosting a charity fund event has multiple benefits. With this step, you will be putting a spotlight on your organization with a good cause.

Secondly, you will be creating awareness of ALS amongst your employees and whoever is associated with your organization. Finally, you will be raising a fund to support the ALS community. Cover the entire event on your company’s social media account to spread awareness further.

Examples of fundraising events that you can try are :

  • Walkathon
  • Charity Gala
  • Car Wash
  • Bake off
  • Cook-off

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3. Screen movies

Movies are a great medium to pass on valuable information in the form of entertainment. You can arrange for a special movie screening on your office campus. Here are some movies that show the life of people with ALS:

  • The Theory Of Everything (2014)
  • Gleason (2016)
  • It’s Not Yet Dark (2016)
  • Jason Becker: Not Dead Yet (2012)

4. Invest in merchandise for employees

Investing in merchandise may be absurd as per your company budget. But actions like this have the potential to create a positive effect on the lives of people with ALS. You can start by distributing T-shirts with the ALS awareness month ribbon on them.

Additionally, you can brief your creative department to create dedicated pamphlets to circulate inside the organization. Lastly, another idea that you can try is giving out badges.

Interesting Facts About ALS

1. ALS has another name

ALS, or Amyotrophic Lateral Sclerosis, is also known as Lou Gehrig’s disease. Lou Gehrig was an American professional baseball player. He was diagnosed with ALS in the year 1939 when he was just 36 years old.

It was then this particular disease came into the limelight. Soon, ALS became to be known as Lou Gehrig’s disease in the United States.

2. This devastating disease was discovered in the 1800s

Records suggest it was in the year 1869 when French neurologist Jean-Martin Charcot first discovered ALS. Later in 1874, Jean-Martin coined the term “Amyotrophic Lateral Sclerosis.”

However, in France, ALS became popular as Charcot’s disease.

3. Someone else spotted ALS before Charcot could

French physician François-Amilcar Aran, with the help of localized electrification, first spotted the presence of different types of muscular atrophy like ALS.

4. One gender is more prone to it

Over the years of research and observation, it has been seen that men are more prone to developing ALS than women. However, extensive ALS research is still going on as to why men are more affected than women.

5. About 5 - 10 percent of ALS cases have a genetic disposition

Existing ALS research cites that five to ten percent of people with ALS inherited the SOD1 gene from their families. The SOD1 was one of the first genes to be identified as a “familial ALS-causing gene.”

90-95 percent of ALS cases are said to be sporadic, which means to have no genetic disposition. Such cases can occur due to several factors, such as exposure to toxic chemicals, oxidative stress, weakened immune system, and abnormalities in the mitochondria.

Latest Research Advancements Related To ALS

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The medical field has miles to go before they find a cure for ALS. So far, FDA has approved Riluzole, Reelyvrio, Tiglutik, Radicava, Exservan, and Nuedexta as part of ALS treatment. These drugs are known to slow down the progress of the disease.

In recent times, experts have suggested a possible stem cell therapy that will be more effective than the existing drug therapy. Other than this, stem cell therapy will prevent further loss of neurons, slowing down the disease more.

Final Word

ALS is a fatal disease. It is high time scientists come up with a cure once and for all. Until then, let’s join hands together this year and observe ALS awareness month. Extend emotional and financial support to families and patients with ALS.

Frequently Asked Questions

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1. When is National ALS Day celebrated?

There is no National ALS Day. But, the International Alliance for MND/ALS Associations observes June 21 as Global ALS/MND day every year to spread awareness of ALS.

2. What color is the ALS ribbon?

The color of the ALS awareness month ribbon is white and navy or blue pinstripes.

3. How is ALS confirmed?

ALS is confirmed with the help of the following diagnostic tests:

  • Electromyography
  • MRI

4. Is May ALS awareness month?

Yes, May is celebrated as the ALS awareness month worldwide.

This article is written by Supriya Singh who is a content marketer at Vantage Circle. Writing is how she keeps her creative side ignited. An avid dog lover. Loves to cook and binge watch TV shows. To get in touch, reach out to editor@vantagecircle.com

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