When Jules and Maria started a podcast in 2019 to tell their story it wasn’t about ALS. But even though Jules’ ALS diagnosis in 2020 would change that, their story is still about so much more—including life, love, and even comedy.
Today is Rare Disease Day, an event that takes place worldwide, typically on the last day of February each year, to help raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. In recognition today, Kristina shares what it’s like to be a ALS caregiver for her husband, Lamar, and her unique perspective on the rarity of ALS.
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.
"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 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.
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.
For National Respiratory Care Week, The ALS Association has compiled a list of the wide variety of free, reliable information and resources for everyone affected by ALS.
We recently launched Nationwide Connect, monthly online support groups for both male and female ALS caregivers designed with one thing in mind—enhancing quality of life and supporting families impacted by ALS regardless of where they live. They follow support group best practices and join people together who are dealing with similar experiences.
The possibility of a government shutdown could have far-reaching and disastrous consequences for people living with ALS and those who depend on government-funded programs and support systems. A shutdown will disrupt the vital services and resources that many individuals with ALS and their families rely on daily.