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.
The type of care that people with ALS receive affects survival and quality of life. That is why the ALS Association is committing nearly $2 million over the next two years to support research focused on optimizing the effectiveness, efficiency, and accessibility of ALS care. These funds, granted through the new Quality of Care Research Awards, will be distributed across five projects that focus on the health and care for people living with the disease.
Stories have connected us for generations, often providing impact and making waves of change. Discover some of the most powerful stories from the ALS community and share to help spread awareness of this disease today.
People with ALS already experience stiff muscles in their hands, arm, legs and feet, and winter temperatures can make this situation worse. Cold weather causes muscles to contract and become tight, which can be painful. However, people living with ALS can still enjoy this time of year. Here are some tips on dealing with cold weather for people affected by ALS.
There is an urgent need for new and improved therapies for ALS, as there is still no cure. To help accelerate drug development and get promising treatments one step closer to regulatory evaluation, the ALS Association has committed nearly $4 million to support four early-stage clinical trials through our Hoffman ALS Clinical Trial Awards.
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.
Even as they face ALS, Tim and Deanna Trausch try to live by message on the ornament that hangs on their bathroom mirror: “Today is a good day to have a good day.”
For people with ALS and their families, traveling presents challenges beyond the typical concerns about weather, delays, and traffic jams. But with some planning and patience, you can ensure everyone is able to make it to their destination safely. Here are some tips to help make the trip as smooth as possible.
Wendy Wilson shares the story of her husband, Michael: his ALS diagnosis and how their family loves, laughs together and supports each other through this journey.
While the number of ALS clinical trials has greatly expanded over the last five years, the number of people living with ALS participating in this research remains low and highly variable across trial sites. Our five 2023 Trial Capacity Award winners are working hard to eliminate barriers to trial participation.
"I feel the more people that use their voices, the more attention we will bring to ALS, and the closer we will be to finding treatments and one day at a cure." Katie Adams is an advocate for people living with ALS, like herself.
For people living with ALS and their families, the holiday season can bring its own set of challenges, both physical and emotional. But the season can still be a time of togetherness, peace and joy. Here are some suggestions to help manage changes and enjoy this holiday season.
Chanel Hobbs is a vibrant 54-year-old residing in Chester, Virginia, with her husband and high school sweetheart, Lamont. Together, with their daughters Angel, 24, and Deja, 23, they’ve cultivated a beautiful life filled with love and shared adventures, despite her ALS diagnosis. Determined to spread awareness of what it’s like to live with the disease, she is sharing her family’s personal journey in her own words.
No two cases of ALS are the same, nor are any two ALS caregiver experiences. While there is no one-size-fits-all answer to every caregiver question, there is often much to be learned from people who are, or who have been, a caregiver for someone with ALS. As National Family Caregivers Month comes to a close, we wanted to take a moment to highlight some of the advice, resources, and support available for ALS caregivers all year long.
When Tony got diagnosed with ALS, he and his wife Karen turned to each other to figure out their path forward, and they found they were better when they could face it together. The role of ALS caregiver wasn’t what Karen had planned, but together with Tony and their family, they set about figuring out this “new normal.”
For someone facing the challenge of becoming an ALS caregiver, there are many paths to gaining the knowledge and experiences they need to care for someone with the disease. Finding accurate and timely information can play a key role in equipping those impacted by an ALS diagnosis with the skills they need to provide the best possible quality care.
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.
Over the past years we’ve had many conversations and interviews with ALS caregivers, and while no two experiences are ever alike, there are often similarities and storylines throughout. In recognition of National Family Caregivers Month, we thought we would share some of these caregiver stories and advice we’ve collected along the way.
For National Family Caregivers Month, we are featuring David and Laura DuBois. David is living with ALS, and his wife Laura is his primary caregiver. As simple as it might sound, their conscious decision to truly LIVE with ALS is what has allowed them to face each challenge and each day, together.