Special Feature on Support Groups As November is National Family Caregivers Month, this edition of ALS Event News focuses on support groups for people living with ALS and their families. The Les Turner ALS Foundation has long offered comforting …
LiveLikeLou’s Outdoor Clean-up and Scholarships
With spring in the air, there’s no better time than now to tackle those outdoor chores with a little help from your (volunteer) friends. Thanks to our partners at the LiveLikeLou Foundation, they are offering volunteer assistance and an opportunity …
Comments from ALS Organizations United in Support of AMX0035 Approval
Submitted for FDA Advisory Committee hearing on September 7, 2022 Amyotrophic lateral sclerosis (ALS) is a horrific, neurodegenerative disease. At terrifying speed, ALS robs people of the ability to move, speak, eat, and breathe. It kills so quickly that people …
Faces of ALS: Raising his voice in advocacy for ALS
Rob Faulstich’s advocacy journey began when his sister-in-law, Diane Costello, was diagnosed with ALS in late 2018. “Prior to Diane’s diagnosis, she had difficulty walking and was tripping frequently going up stairs and curbs,” says Rob. “When she sought treatment …
Alfredo Pedro Perro World’s Longest Turkey Trot for ALS
Five years ago, ultramarathoner Alfredo Perro complained to his friend Scott Kummer that he wanted to run one last 100 mile race before the end of the year. Scott and Alfredo decided to simply run from the Chicago Bean to …
World’s Longest Turkey Trot: Alfredo Pedro Memorial Run
Years ago, ultramarathoner Alfredo Perro complained to his friend Scott Kummer that he wanted to run one last 100 mile race before the end of the year. Scott and Alfredo decided to simply run from the Chicago Bean to the …
ALS Learning Series: Introducing My ALS Decision ToolTM – Empowering You to Take Control of Your ALS Care
About the Program: My ALS Decision Tool™ was developed in collaboration with people living with ALS, caregivers, advocates, researchers and clinicians. This groundbreaking decision tool is a web-based, interactive series of questions and considerations which can help you take control of …
July ALS Learning Series: Complementary and Alternative Therapies for People Living with ALS and Caregivers
About the Program Integrative holistic therapies can play a major role in helping patients feel better, especially when they are dealing with chronic neurologic diseases. Dr. Tavee will discuss how people living with ALS and their caregivers can benefit from …
Comments to Centers for Medicare & Medicaid Services on Seat Elevation Systems as an Accessory to Power Wheelchairs
UPDATE: As of May 16, 2023, Medicare will formally cover wheelchair seat elevating systems for many types of power wheelchairs. We applaud this decision and are proud to have advocated for it. These systems are vital for those living with a disability. …
Faces of ALS: Celebrating Glenview Tag Days: 25 Years of Community Support & Fundraising
In the heart of Glenview, Illinois, a remarkable tradition has flourished over the past 25 years. Not only have the volunteers behind this grassroots campaign raised valuable funds for ALS care and research, but what they’ve learned can help you …
