I am the legacy of Oscar Aukschun, who was a wood pattern maker and first generation American and a resident of Cleveland, Ohio who developed weakness of his hands and arms in 1943 around the age of 43 years. He was a hard-working father who provided for his wife and three children.
Digital Assessment Tools for FTD and ALS Awards support the development of digital tools with broad applicability across the FTD-ALS spectrum beyond the discovery stage toward validation.
Recent changes at the Centers for Medicare & Medicaid Services (CMS) will enable people with ALS to receive critical services provided by speech therapists, normally provided at in-person visits, via telehealth during the pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.
When I was about 8 years old, I asked my mother about my grandmother, and she shared her mom died when she was 10 years old from “paralysis.” What my mother never knew was that I was afraid when I turned 10 years old, she would die of “paralysis,” just like her mom. Little did I know a mere 10 years later that fear would come true. And that is the beginning of my journey in life with the beast known as ALS.
Emergencies and disasters can strike quickly and without warning. For the thousands of Americans living with ALS, emergencies such as fires, floods and acts of nature present a real challenge. June 1 marks the official start of hurricane season and with the coronavirus pandemic, it’s more important than ever to make sure you are prepared.
Mike Deeley, a United States Navy veteran from Columbia, Pa., proudly served from 1988 to 1992 as an Aviation Electrician Third Class. In December 2016, he was diagnosed with ALS. Today, Mike generously shares his story about how he is determined to make a difference despite his diagnosis.
"My father was the life of the party; and my sister was always kind and giving,” explained Legacy Society member, Rob Morehouse of Coventry, Connecticut. These are just a few of the traits that Rob warmly recalls about his family – both of whom he lost to ALS.
Created by Sascha Groen and her husband, Anjo Snijders, who was diagnosed with ALS in 2017 at the age of 35, "LUKi & The Lights" follows the journey of LUKi, a charming robot who navigates life after being diagnosed with ALS.
Over the weekend, we spent a few days with Tanner Hockensmith, Executive Director of The ALS Association Texas Chapter, as he and his team were setting up their supply staging facility in Houston and visiting families in need. At the time, they had reached out to all of the people with ALS in the areas affected by Harvey, and managed to connect with most of them.