ALS Awareness Month: What You Need to Know — and Why New Hope Is Growing
Every May, people across the country come together to honor ALS Awareness Month—a time to shine a light on a disease that often moves faster than families can prepare for, yet inspires incredible strength, advocacy, and scientific progress.
ALS, also known as Lou Gehrig’s disease, is a condition that gradually takes away a person’s ability to move, speak, swallow, and eventually breathe. It’s a disease that challenges not only the person diagnosed but also the entire family who walks the journey with them.
But today, something is different: For the first time in decades, real breakthroughs are happening, offering families more hope than ever before.
What Is ALS—In Simple Terms?
ALS is a disease that affects the nerve cells that control muscles. Over time, those nerve cells stop working, and muscles weaken little by little.
People with ALS remain mentally aware the entire time — that’s one of the hardest parts. Imagine your mind functioning normally while your body slowly stops cooperating.
Researchers still don’t know exactly what causes ALS for most people. Only about 10% of cases are connected to inherited genetic mutations1
Published in IJMS, Volume 26, Issue 18.
Who Does ALS Affect?
ALS can affect anyone — men, women, parents, grandparents, veterans, athletes, teachers, neighbors.
Some important things to know:
- Most people are diagnosed between ages 40 and 70.
- Both men and women get ALS, though men are slightly more affected.
- Veterans are twice as likely as civilians to develop ALS.2
There are about 20,000 Americans living with ALS at any moment. Every case is unique, but every person and family faces a life-changing journey.
How ALS Impacts Families
ALS doesn’t just affect the body — it affects the rhythm of daily life.
Families often face:
- Physical challenges: Wheelchairs, lifts, feeding devices, breathing machines.
- Emotional challenges: Grief, uncertainty, and changing roles within the family.
- Practical challenges: Caregiving, mobility changes, home modifications.
- Financial challenges: Loss of income, medical travel, equipment, and in-home care.
Because ALS progresses at different speeds, families have to constantly adapt. Many need help not just medically, but emotionally and financially.
Is There Hope? Absolutely — And Here’s Why
In the last two years, there have been breakthroughs that experts are calling transformational.
A Drug That Helps Some People Maintain Strength
A treatment called Tofersen (Qalsody), designed for people with a specific genetic form of ALS (SOD1-ALS), has shown something scientists once thought was impossible: Some patients regained strength and function. Long-term research from WashU Medicine and JAMA Neurology found that about a quarter of patients experienced improvement or stabilization — something rarely seen before.3
It’s not a cure, and it only helps a small group of people, but it proves a powerful point: ALS is not unbeatable.
A Blood Test That Detects ALS Years Before Symptoms
This is one of the biggest scientific leaps in decades.Researchers from Johns Hopkins and the NIH developed a blood test that can detect ALS with over 98% accuracy, sometimes 10 years before symptoms appear. This could change everything — earlier diagnosis, earlier treatment, earlier support, and better planning.4
New Therapies That Target the Root Cause
Scientists are developing new treatments aimed at stopping the disease before it causes damage.
Some examples:
- STAUFEN-1 therapies that help protect brain cells from dying.5
- Gene therapies like CTX1000, which have stopped ALS progression in mouse studies.6
These aren’t everyday medicines—they’re cutting-edge tools that work at the genetic or cellular level. They show real promise for slowing, stopping, or even reversing the disease in the future.
Record-Level Funding to Speed Up Progress
The federal government increased funding for Act for ALS to $90 million in 2026 to accelerate treatments and expand access to care.7That means more studies, more trials, more innovation—and more hope.
How Living Benefits May Potentially Help
As families navigate the emotional and physical challenges of ALS, they also face financial strain.
This is where life insurance may potentially help make a meaningful difference.
The main reason to buy a life insurance policy is for the death benefit protection a person needs. In addition to this death benefit protection, some life insurance policies may provide living benefits.
Living Benefits may allow someone to access part of their life insurance benefit early if they’re diagnosed with a qualifying chronic, critical, or terminal illness.
This money can help with things such as:
- Home care
- Medical equipment
- Travel to specialized clinics
- Lost income
- Home modifications
- Family support
It won’t change the diagnosis — but it can potentially give families financial breathing room during one of the toughest times of their lives.
Is a Cure Coming?
No cure exists yet, but for the first time, researchers believe it’s possible.
That belief is rooted in:
- Therapies that stabilize symptoms
- Early-detection tools that identify ALS long before damage is done
- Gene-targeting treatments that fix or silence harmful mutations
- New funding that accelerates all of the above
Progress is moving faster today than at any other point in ALS history.
Why ALS Awareness Month Matters
ALS Awareness Month isn’t just about understanding a disease. It’s about honoring the people living with it, supporting their families, and sharing hope.
It’s about shining a light on:
- Courage
- Community
- Science
- Progress
- Compassion
And it’s about reminding families that while ALS changes everything, they do not have to navigate it alone—medically, emotionally, or financially.
Frequently Asked Questions
What exactly is ALS?
ALS (Amyotrophic Lateral Sclerosis) is a disease that affects the nerve cells that control your muscles. Over time, those nerve cells stop working, making everyday movements—like walking, lifting a cup, speaking, or swallowing—more difficult. People stay mentally aware, but their bodies stop cooperating.8
Who usually gets ALS?
ALS can affect anyone, but most people are diagnosed between ages 40 and 70. Both men and women can get it. Veterans are twice as likely to develop ALS compared to civilians.9
Only about 10% of cases are inherited, meaning most people who get ALS have no family history of the disease.10
What are the first signs of ALS?
Early signs vary, but some common changes include:
- Muscle weakness or twitching
- Trouble with strength
- Slurred speech
- Difficulty walking or carrying items
- Unusual fatigue
Researchers are developing new blood tests that may one day identify ALS years before symptoms even appear.11
How does ALS affect families?
ALS impacts more than the person diagnosed. Families often face:
- New caregiving responsibilities
- Loss of income if a loved one can’t work
- Home modifications and equipment needs
- Emotional stress as roles shift and abilities change
It can be overwhelming, which is why education, support networks, and financial planning are so important.
Is there a cure for ALS?
There is no cure yet, but for the first time ever, researchers believe a real breakthrough is possible.
Why? Because new treatments are showing progress, including therapies that help some people maintain or regain strength, blood tests that detect ALS early, and gene-focused treatments that aim to stop or slow the disease.12
What new treatments or therapies bring hope?
Recent advancements include:
- Tofersen (Qalsody) – A treatment that helped some people with a certain genetic form of ALS actually improve strength and stabilize symptoms, something once thought impossible. [medicine.washu.edu], [investors.biogen.com]
- New gene- and protein-targeting therapies – These are designed to protect nerve cells or reduce damage, including experimental treatments that stopped disease progression in animal studies.15
- Record research funding – The U.S. boosted Act for ALS funding to $90 million, speeding up everything from trials to access.16
Together, these breakthroughs represent a new chapter of hope.
The main reason to buy a life insurance policy is for the death benefit protection a person needs. In addition to this death
How may life insurance potentially help?
Living Benefits may allow people to access a portion of their life insurance early if diagnosed with a qualifying chronic, critical, or terminal illness.
For families facing ALS, this money can help with things such as:
- Home care and caregiving
- Medical equipment not covered by insurance
- Lost income
- Home modifications (ramps, lifts, etc.)
- Travel to specialists or ALS clinics
- Giving families time together without financial panic
Living Benefits don’t treat ALS — but they may potentially help families focus on what matters instead of how they’ll afford care.
Why is ALS Awareness Month important?
It’s a reminder that people with ALS and their families aren’t fighting alone.
ALS Awareness Month sparks:
- More understanding
- More compassion
- More research
- More funding
- More conversations
- More hope
It’s about honoring people living with ALS today — and pushing for a future where no family has to face this disease.
National Life Group
The National Life Media Team produces educational content focused on financial literacy, insurance, retirement, and long-term financial preparedness, helping individuals and families better understand complex financial concepts.