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ALS Awareness Month – ALS Awareness Month 2018

ALS Awareness Month 2018

We welcome May with open arms and shorter pant lengths. With May comes another month of awareness, this time for a disease in desperate need of funding and advocacy: ALS. ALS Awareness Month is a campaign established to spread mindfulness and raise funds for research for a cure for ALS, or amyotrophic lateral sclerosis. Notable cases include Lou Gehrig (the AKA of this disease), Stephen Hawking, Jon Stone, and countless others. Exploring this article will grant you an education on the disease, a how-to on how you can get involved, and the importance of why. Read further to discover the many facets of amyotrophic lateral sclerosis.

What on Earth Does Amyotrophic Mean?

What is ALS? It’s a progressive neurodegenerative disease that affects nerve cells in the brain. To put it simply, ALS attacks the body’s nerve cells that control voluntary muscle movement. When those neurons are attacked, the body becomes disabled and voluntary movement is lost. The onset of ALS is often subtle and can go unnoticed; earliest symptoms include cramps, stiff or weak muscles, and difficulty swallowing at times. It isn’t a pretty picture, like all cureless diseases. Most of us know the story of Stephen Hawking, and how the only thing he was able to move at his recent death was a single cheek muscle. This debilitating illness prohibits patients’ abilities to swallow, speak, walk, move, and even breathe.

Throughout most of the world, rates of ALS are unknown. Research has shown, however, that ALS occurs randomly and equally among all races and ethnicities. Research has also shown that ALS is only inherited genetically by 5-10% of sufferers. Let’s do that math; up to 95% of cases happen with no clear risk factors. This disease is particularly eerie because it could happen to anyone, thus emphasizing the importance of ALS Awareness Month.

ALS Awareness Month Stats

Is What I Already Know the Truth?

The following myths are provided by Answer ALS, a global organization dedicated to developing strategy and research to put an end to ALS. These myths are important to keep in mind! Perpetuating them can affect the health of others.

MYTH 1: ALS is caused by Lyme disease or other infections.

Lyme disease’s symptoms, while similar to those of ALS, are actually treatable by antibiotics. Your doctor will be able to separate these two diseases, so be sure to visit your doctor if you’re unsure.

MYTH 2: ALS only affects motor activity.

ALS doesn’t affect the 5 senses (taste, smell, hearing, sight, and touch) but it can affect cognitive ability. A small number of ALS patients develop mild to severe dementia during the longevity of their illness.

MYTH 3: ALS is a disease of old people.

Degenerative diseases are often associated with others, such as Alzheimer’s or Parkinson’s. ALS has a median age of 54; in fact, Lou Gehrig was diagnosed in his mid-30s and passed away from the disease at the young age of 38.

MYTH 4: ALS is caused by sports.

While many sufferers of ALS have been athletes, research to suggest that sports are a contributing factor in developing the disease is incomplete.

MYTH 5: There is no cure for ALS because no company cares about finding one.

Many believe this myth considering how many FDA-approved drugs exist to slow ALS progression: three. Interest has risen over the past few years, allowing funding and research for clinical trials (many attribute this interest to the 2014 ALS Ice Bucket Challenge, raising over $115 million for funding).

Wait, Real Ice Water?

Speaking of the ALS Ice Bucket Challenge: did you know it became the world’s largest global social media phenomenon? More than 17 million people uploaded their videos to Facebook, racking up over 10 billion total views. Even though it started in 2014, it remains an annual campaign used to further raise awareness every August. Do you want to get involved? Here’s how you can participate:

  1. ACCEPT: Accept the challenge. It’ll be cold, but it’s for a good cause.
  2. RECORD: Take a video of yourself dumping a bucket of ice water over your head. Again, it’ll be cold. Next.
  3. UPLOAD: Upload your video to a social network of your choice; tag 3 friends! Tag means they’re it – they start at step 1 and repeat.
  4. GIVE: Make a donation! $1 or $10,000 – any amount helps someone in need. Even if you can’t donate, uploading and sharing creates a ripple effect, spreading the message of ALS awareness.

Since the ALS Ice Bucket Challenge’s inception, four genes contributing to the disease have been identified. This renewed hope in research has allowed scientists to pinpoint a key genetic cause of the disease. Finding the root of a disease is the first step in seeking out its cure.

ALS Awareness Month IBC

What Else Can I Do?

What else can you do for ALS?  The ALS Association, a national non-profit dedicated to improving the quality of life for those living with ALS, emphasize the importance of enhanced awareness through:

Education

Hazy conceptions of what ALS is are rampant around the world. The ALS Association created a short video explaining the signs, symptoms, and potential causes of ALS that you can share through social media, email, or a website. Use a trending hashtag like #ALSaware so that others can find your content and expand its message!

Coloring It Red

The color red is the associated color for ALS research and causes. Thanks to ALS News Today, we have instructions on how you can make your Facebook status red in honor of the cause. Click here to learn how!

One Dollar Difference

If you’ve already donated and wish to get others to do the same, you can use the One Dollar Difference platform, which helps you build your own ALS fundraising web page. You can set goals, make it pretty, and use other tools available to advance your cause. You can be the difference!

Taking Part in Community Events

This one may be harder to coordinate, but it’s easy to participate in! For instance, the West Shore YMCA holds an annual Move-A-Thon in partnership with Project ALS to raise money for the Harrisburg Area YMCA’s Annual Campaign as well as ALS research. For only $10, you can dance for hours with your friends while being a hero for someone else.

The month of May isn’t just for outdoor activities and finals. Work toward a cure by researching ALS Awareness Month and using your influence for good.

 

 

–Madeline Kelly, Digital Communications Coordinator

 

 

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