What Is Global ALS Awareness Day and Why It Matters

June 21 is the summer solstice in the Northern Hemisphere. It marks a turning point. Maybe that's why the ALS community chose it as Global ALS Awareness Day, hoping it marks a turning point in the lives of those living with ALS. It's a day of recognition and hope for everyone supporting the research, treatment, and cure for ALS.

Amyotrophic Lateral Sclerosis, or ALS, is a rare motor neuron disease that affects approximately 1 to 4 in every 100,000 individuals. More than 30,000 Americans live with ALS, and each year 6,400 are diagnosed with it.

Modern mobility aids, like power wheelchairs, help people with ALS stay active. However, we need more awareness and acceptance. By learning about it, we can support those living with ALS and help break down barriers.

Let’s find out more about it. 

What Is Amyotrophic Lateral Sclerosis (ALS)

ALS, also called Lou Gehrig's disease, is a motor neuron disease. It is named after the famous baseball player Lou Gehrig. When diagnosed with it, he had to retire from a promising career in 1939. Neither his athletic figure nor his healthy lifestyle could save Lou, as ALS had no cure back then, and it remains without one even today.

ALS affects the nerve cells in the brain and spinal cord, which control your muscles. When you have ALS, these cells die, and you start losing muscle control progressively. That makes it hard to move, speak, eat, and breathe. People living with ALS can survive around 2 to 4 years after the diagnosis.

1. What Causes ALS?

The exact cause of ALS is not known. Sometimes, it runs in families. However, around 90% of the ALS cases are not inherited. Scientists are still working on its causes and possible cure.

2. What Are the Symptoms of ALS?

Symptoms of ALS start with muscle weakness. You might find it hard to do simple things like walk or use your hands. Over time, the symptoms get worse and lead to progressive paralysis. In the final stages, people living with ALS have trouble swallowing, speaking, and breathing. 

Challenges Faced by People with ALS

To say living with ALS is tough would be an understatement. It makes even the simplest tasks very hard. Here are a few challenges people with ALS have to face: 

1. Mobility: As muscles weaken, people with ALS may lose their ability to walk, stand, and even sit up.

2. Communication: People living with ALS might find it difficult to talk. Many ALS patients rely on Speech-Generating Devices (SGDs).

3. Swallowing: ALS affects the muscles responsible for swallowing. Without proper support, this can lead to weight loss and dehydration.

4. Breathing: ALS weakens diaphragm muscles, which help you breathe. Some people living with ALS might need a Bilevel (BiPAP) machine or a portable ventilator.

These challenges can make one feel isolated. However, with the right mobility aids and family support, many ALS patients can lead active lives. 

When Is Global ALS Awareness Day and Why It Matters

The global ALS Awareness Day is important for many reasons. For one, it helps generate awareness. Many people still do not know about this disease. Spreading awareness about ALS can lead to more research funding. That means people with ALS can get better support, assistive technologies, and a cure someday.

June 21 also brings hope for those living with ALS. It shows that people care and want to help. Friends and families caring for their loved ones with ALS feel supported. It brings people from different communities, races, and ethnicities together to fight ALS and its challenges. It helps us all to work collectively towards an ALS-free world.

How Can You Participate in Global ALS Awareness Day

Like the National Mobility Awareness Month and the Developmental Disabilities Awareness Month, there are many ways to support the Global ALS Awareness Day. Here are a few ideas on how you can join this fight:

1. Learn and Share: Learning and sharing is a great way to spread awareness about ALS. You can like and share social media posts by support groups like the ALS Organization. Join their Facebook and Instagram pages to spread the word. And while doing that, use the hashtag #ALSMNDWithoutBorders.You can also join social media challenges to raise awareness about ALS. The Ice Bucket Challenge is probably the most successful online ALS awareness campaign. It helped the ALS Organization collect donations for medical research.

2. Donate: Your donation provides valuable support for ALS patients. Donations can help ALS support groups and non-profits provide better therapies, assistive technology, and care for ALS patients. Donations make ALS a livable disease until we can find a cure.

3. Join Events: Many cities, companies, and nonprofits organize walks, runs, or other events to raise money and awareness. For example, the ALS Organization has scheduled ALS Nexus, a conference in Dallas, TX, on July 14 this year. They have also organized Walk to Defeat ALS in Conroe, San Antonio, Houston, Austin, Fort Worth, and Mission in October 2024.

4. Support Someone with ALS: On a personal level, you can decide to support someone with ALS. It can be your friend or family member. You can run errands, help them with doctor's appointments, or spend quality time together. These simple gestures can mean a lot to someone living with ALS.

Conclusion

Global ALS Awareness Day is the right time to learn about this rare motor neuron disease and help spread the word. You can make a difference by sharing, donating, and supporting. Remember, growing awareness can lead to better treatments and more support for ALS patients. It can break down the barriers and help people with ALS live fuller lives until we find a cure.

Build My Wheelchair stands with you in this fight. We provide mobility aids, including power wheelchairs, for people living with ALS. Call us today (844) 269-4335 to learn more about our brand and our products!