Blog

525 results
ALS Association
Caregiver Opens Up About ALS and the Holidays
Jen LeVasseur’s caregiver journey began while she was still a newlywed. Her husband, Noel, was diagnosed with ALS just 17 months after their wedding. Noel has two daughters from a previous marriage, Jen two sons. (They embrace the Brady Bunch, blended family analogy.) We sat down with Jen earlier this year to talk about caregiving and how ALS impacts the holidays.
Blog
ALS Association
Bride-to-be Caregiver Reframes Future with a Fiancé Living with ALS
Lynn Hogan became a caregiver early in her relationship her fiancé, Steve Ziegler. “On our first date we went out and he was sitting next to me and he said, ‘You might notice -- don't get weirded out or anything -- but you might notice some twitching, weird stuff going on with my arms. We don't know what it is yet. But one of the things it could be is ALS,’” she recalled.
Blog
ALS Association
Groundbreaking ALS Voice of the Patient Report Submitted to FDA
The ALS Association submitted a report to the FDA documenting the real impact ALS has on people living with the disease and their caregivers in order to inform the development of treatments. The information in the report draws from a survey of people living with ALS.
Blog
ALS Association
The Iron Woman Behind the Iron Horse
The Greater New York Chapter of The ALS Association has commemorated a pivotal caregiver from ALS history with a luncheon named in honor of Eleanor Gehrig, the wife of famed baseball hero Lou Gehrig.
Blog
ALS Association
Anthony Vick: "Faith Over Fear"
Anthony Vick spent 16 years serving his country in the Army and Air Force Reserves, including 10 years in the civil service. Vick says he was lucky to be able to serve his country, service that came to an end in 2017 when he was diagnosed with ALS.
Blog
ALS Association
Maya Bulmer: “Today is what we have”
Maya Bulmer was thrust into the role of caregiver at a young age. Like many seniors in high school, Maya spent the 2018-2019 school year filling out college applications, readying for the next chapter in her life.
Blog
ALS Association
ALS Community Responds to FDA Guidance Document with Call for More Urgency, Flexibility
The ALS Association and its partners submitted comments to the Food and Drug Administration to further inform the agency’s implementation of the final guidance on the development of drugs and treatments for ALS. The comments underscore the need for urgency and commend the FDA for including voices from our community in its rulemaking process. Click here to view the comments.
Blog
ALS Association
ALS Association Joins Coalition Partners to Lead Fight for Access to Noninvasive Ventilators
A bill championed by The ALS Association was introduced in Congress today that would remove noninvasive ventilators from Medicare’s competitive bidding program. Reps. Morgan Griffith (R-Va.), Peter Welch (D-Vt.), Gus Bilirakis (R-Fl.), John Larson (D-Ct.), and Darren Soto (D-Fl.) have introduced H.R.4945, the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act of 2019.
Blog
ALS Association
Show Appreciation to a Caregiver During National Family Caregivers Month
November is National Family Caregivers Month. Join The ALS Association in honoring caregivers throughout the month. “Being a caregiver of someone with ALS is incredibly challenging, and my role hasn't even begun to be that physical yet,” said Jen LeVasseur. Her husband, Noel, was diagnosed with ALS in 2017, just over a year after they were married.
Blog
ALS Association
ALS Association Contributes $3.3 Million to Fund Groundbreaking Genome-Sequencing Database
A global, centralized, cloud-based repository of ALS genetic data is being assembled with funding from The ALS Association. This is the first such repository of its kind. Much of the research aimed at finding a cure for ALS is in the area of genetics. Such work requires genomic sequencing, a process whereby individuals' genes are mapped in a way that can be compared to the genes of others who do not have ALS in an effort to identify variations that may be factors in the development or progression of the disease.
Blog
ALS Association
High School Students Spread Awareness and Raise Money for ALS Research
When the Biology Honors class kicked off a special course to learn more about neurological diseases, they turned it into a unified effort to educate their community and raise over $3,000 for ALS research. The ALS Association spoke to some of the folks behind the project.
Blog
ALS Association
How ALS Association Advocates Boosted Congressional Funding for ALS Research
Last week Congress passed, and the president signed, a continuing resolution that will fund all federal programs at current levels through November 21. Before the continuing resolution expires, Congress must either pass full appropriations bills for the 2020 fiscal year or pass another continuing resolution.

Blog
ALS Association
11 Ways to Maintain Nutrition in People with ALS
National Malnutrition Awareness Week kicks off today. The ALS Association has resources available to help make sure people living with ALS do not struggle with malnutrition as the disease progresses.
Blog
ALS Association
ALS Association Thanks Community Following FDA Release of Final Guidance Document
On Monday, the Food & Drug Administration (FDA) issued a finalized ALS Drug Development Guidance for Industry. This is one important step in comprehensive efforts to bring therapies to people with ALS more quickly. Five years ago, there was no clarity around what the FDA expected from companies pursuing ALS treatments. The ALS Association recognized this problem, galvanized the broader community, and engaged the FDA to provide a clear roadmap that also can respond to new science as it emerges. The FDA Guidance is one part of a commitment that will not be complete until we have a cure for all people with ALS.
Blog
ALS Association
Results from Our ALS Community Survey
The ALS Association is pleased to share results from our recent community survey. We were interested in hearing about programs and services that people reported as being important, reasons why people were not accessing some programs, major challenges, and issues around medications. Information gained from the survey will be incorporated in to care services planning activities and will be used to inform strategic planning, priority setting, program outcomes, and program improvements.
Blog
ALS Association
Challenge Me to Find the Path to a Faster Diagnosis of ALS
Diagnosing ALS is a lengthy and frustrating process for clinicians and families alike. This is due in large part to the absence of a specific biological indicator, which would signal the presence of the disease in people experiencing the onset of ALS symptoms. Unlike cancer and diabetes, which can be diagnosed and monitored through laboratory tests, ALS has no unique biological markers to confirm an ALS diagnosis.
Blog