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ALS Association
Finding Critical Resources for ALS Caregivers
The Association provides free online access to a variety of options, including publications, videos, books, and informative websites that provide a wealth of easy-to-access information on important topics relevant for people living with ALS and their caregivers. 
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ALS Association
Patty Letters: Advice from a Caregiver
The Letters family has graciously shared different perspectives of their family’s very personal journey with ALS on our blog throughout the past year. In recognition of National Family Caregivers Month, Patty Letters was kind enough to tell her side of the story living as an ALS caregiver.
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ALS Association
Amylyx Files NDA for AMX0035
Amylyx recently filed a New Drug Application for AMX0035, a promising new drug that has proven safe and effective at slowing progression of ALS and extending the life of people living with the disease. The ALS Association has called on the FDA to approve the application with urgency.
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ALS Association
GREAT NEWS! House Subcommittee Unanimously Approves ACT for ALS
Accelerating Access to Critical Therapies (ACT) for ALS (H.R. 3537) was approved by a unanimous vote on Thursday, November 4 in the House Energy and Commerce Subcommittee on Health. Thanks to everyone within the ALS community who has advocated for passage and who has worked on Capitol Hill to help make this important step happen. The strong bipartisan support for this bill means smooth sailing as the bill goes to the full House Energy and Commerce Committee and then the full House for approval.
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ALS Association
10 Ways to Help Families Impacted by ALS
Only those living through the experience first-hand truly understand the challenges of being a full-time caregiver, particularly for someone living with ALS. The ability to complete basic daily tasks can be overwhelming and the need for help is great.
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Massachusetts Chapter
Petrovsky Poetry: November Feature
Debbie Petrovsky, a woman with ALS residing in Massachusetts, pens poetry to articulate her experience living with the disease. Her unique expression is unique to her experience yet offers insight for those looking to learn more about the challenges of ALS.
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ALS Association
One Man’s Determination to Make ALS a Livable Disease
Avi works closely with The ALS Association, fundraising to ensure all people living with ALS have access to effective treatments and care. Almost completely paralyzed and unable to speak, he communicates by typing using small head movements. “My campaign to help find treatments and a cure is done primarily through a computer,” he says, “but my life is filled with joy, and I am living with ALS.”
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ALS Association
Q&A: How to Begin a Discussion Around Genetic Counseling and Testing
The ALS Association believes that upon diagnosis, people living with ALS/MND and their families must have the right to access genetic counseling and testing, current education about clinical genetics in ALS/MND and safeguards against genetic discrimination. Thanks to a sponsorship from Biogen, the diagnostic company Invitae is offering genetic testing and post-test counseling to people with ALS and their families at no charge.
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ALS Association
Understanding Respiratory Function and ALS
The impact of ALS on breathing is likely one of the most daunting aspects of the disease journey and one for which you and your family can and should prepare for early on. There are many different options and interventions to consider, and education and proactive planning can help to ease the stress for everyone involved.
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ALS Association
Researcher Spotlight: Marion Sommers-Spijkerman
We talked with Dr. Marion Sommers-Spijkerman, postdoctoral fellow from the Netherlands, to learn more about her research focused on developing and evaluating a guided web-based self-compassion intervention aimed at reducing self-stigma in people living with ALS and their primary caregivers.
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ALS Association
Medicare Open Enrollment Begins Today: What You Need to Know
Navigating the world of healthcare and insurance, especially Medicare, can be very complicated and overwhelming. It's important to make the right decisions when it comes to health insurance plans and to understand the available options that could impact the critical care you need.
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ALS Association
Navigating Medicare Open Enrollment
Thanks to the tireless work of ALS advocates, people diagnosed with ALS who already qualify to receive SSDI benefits are immediately eligible for Medicare as well. That makes Medicare open enrollment an important window of time for the ALS community.
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ALS Association
Using a Megaphone to Tell MY ALS Story
When my husband Tom was diagnosed with ALS, we were embraced by the ALS community. But as his health declined, I didn’t really feel ALS was what was stealing my husband from me. I felt more connected to people losing loved ones to frontotemporal dementia, also known as FTD. I did lose my husband to ALS… a particularly cruel and nasty form of ALS that includes FTD.

Here is my ALS story.
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ALS Association
The Benefits of Physical Therapy for People Living With ALS
October 1st marks the first day of National Physical Therapy Month, a time to raise awareness of the key role that physical therapists play in helping people improve mobility, find relief from pain, and live healthier, more physically able lives.
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ALS Association
Here’s Why the ALS Registry and Biorepository Matters
The National ALS Registry and Biorepository was created back in 2007 to help understand how prevalent ALS is, who is developing ALS, and what the possible causes are. Its mission is also to help support researchers in discovering treatments and cures and in preventing ALS.
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ALS Association
Grief & Loss: Exploring the Emotional Impacts of ALS
We recently spoke with JoCarolyn Chambers, care services manager at The ALS Association, to learn more about her experience in the field of grief counseling, how to handle these difficult and sensitive conversations about loss and the advice she has for people impacted by ALS.
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