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.
Amanda Howard has always used writing to process things personally and professionally. When she faced the challenges of living with ALS, she started blogging about it - at first for herself, and then for the community.
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.
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.
"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.
It's ALS Awareness Month, an opportunity for the ALS community to work together to help educate people about this devastating disease and shine a spotlight on the impact ALS has on the families it touches. To kick off the month, we’re highlighting eight easy ways you can get involved and help raise awareness of ALS, this month, and beyond.
June 21 is a solstice, a turning point, if you will, and each year the ALS/MND community around the world celebrates Global ALS/MND Awareness Day to express their hope that this day will be yet another turning point in the search for causes, treatments and ultimately a cure of ALS/MND.