To help educate the public and raise awareness of the growing issues people with ALS and their families struggle with, ALS Association CEO Calaneet Balas recently shared her views about insurance denials in an op-ed published by the International Business Times, specifically relating to the use of ventilators and assistive technology.

There is no doubt that 2023 saw significant breakthroughs in advocacy, care and research. Here's a look at the top ten blogs of the year that covered it all.

In 2023, unprecedented accomplishments were made in the fight against ALS in care, research, advocacy and more. We can't wait to see what 2024 has in store towards our vision of creating a world without ALS.

While veterans with ALS are entitled to benefits, they don't always receive them. But Earnest Hill, former member of the U.S. Air Force, is dedicating his life to changing that.

Reducing the financial burdens of ALS is part of our commitment to making ALS a livable disease until we can cure it for everyone. We are working hard to mitigate the economic impacts of ALS in a variety of ways. For complex financial or insurance issues, we sometimes turn to our partnership with the Patient Advocate Foundation (PAF).

Cathy Cummings, executive director of the International Alliance of ALS/MND Associations, believes someday we’ll see a world free of ALS/MND. She also believes we won’t see that day unless we stay committed to working together—everywhere—to make it happen. "We'll never solve ALS until we include the whole world,” she says. “A strong partnership among all organizations dedicated to fighting ALS can move the needle on finding a cure and in making ALS livable."

As you may have heard, we are going through a period of transition and I just want to take a moment to explain what is happening. Most of you want to know that we will continue to provide high-quality care services, state and national advocacy, and global ALS research. Let me reassure you -- we will. In fact, we will now better be able to do those things -- for everyone, everywhere.

We are excited to share our 2023 Mid-Year Report, detailing the work and achievements that have shaped the first half of this year, touching on all aspects of our mission: research, care services and advocacy.

The ALS Association has launched My ALS Journey™, a new interactive, web-based tool that allows people living with ALS to take control of their journey with the disease. Developed in consultation with the ALS community, My ALS Journey is designed to put individuals living with ALS in the driver’s seat of their own health care journey.

The FDA announced it has granted accelerated approval to tofersen, a treatment for people living with mutations of the SOD1 gene. This is a significant victory for the ALS community and our efforts to make ALS livable for everyone, everywhere, until we can cure it.  

In recognition of National Volunteer Week, we are shining a spotlight on some of The ALS Association’s amazing, dedicated volunteers, and highlighting the incredible work they are doing to support our mission.

We spoke with Kara Nett Hinkley, vice president of state policy at The ALS Association to learn more about the role that state advocacy can play in the fight against ALS.

In recognition of Rare Disease Day, Kristina Woody shares more about what it’s like to be a caregiver for her husband, Lamar, and her unique perspective on the rarity of ALS.

For people living with ALS, the enjoyment and escape video games may have once brought is far too often another thing the disease takes from them. As muscles weaken and fine motor functions decrease, handling video game controllers and keeping up with fast-paced game play can cause frustration and cause people to give up on gaming all together.

ALS doesn’t care where a person lives, and a person with ALS in Florence, Italy is as much in need of reliable care and resources as someone in Florence, South Carolina. At the International Alliance of ALS/MND Association meeting in late 2022, proud “Mapper” members Amanda Stanko, senior solution engineer at Esri, and Pat (who joined remotely) shared how they are taking their clinic mapping tool internationally to provide the resource for people with ALS around the world.

We spoke with Scott Kauffman, chairman of The ALS Association Board of Trustees and caregiver to his son, Stephen, who is living with ALS, to look back on the achievements made in 2022 and learn more about what he sees ahead in 2023.

More than 200 leaders from over 40 countries representing the International Alliance of ALS/MND Associations' many member associations came together, both in person and virtually, to share updates on the progress being made around the world in ALS care, support, technology, science and organizational development.

From the latest updates on ALS research and advocacy to information about caring for people living with ALS and inspiring stories from around the country, The ALS Association’s blog covered it all in 2022. Here is a quick look at the top ten posts our readers enjoyed most.

Across our mission, we saw amazing progress in the fight against ALS in 2022. When we come together as one team with one mission, we have an opportunity to change the world.

The ALS Association spent over $2 million helping fund the development and clinical trial of AMX0035. When the results of that trial showed it was safe and effective in treating ALS, the ALS Association led an advocacy campaign to push the FDA to approve the drug. After two years of advocacy, the FDA finally approved AMX0035.