Blog

603 results
ALS Association
Congress Approves Key Funding to Help Us Reach Our Goal to Make ALS Livable
Thanks to the tireless efforts of ALS advocates across the country, the House included many of our aggressive requests for new and increased investments in research to find treatments and a cure, slow symptom progression, reduce the number of new cases, and increase the length and quality of life for every American living with ALS.
Blog
ALS Association
Understanding the Genetics of ALS May Be a Key to Prevention
As part of this year’s National Advocacy Conference, Dr. Bryan Traynor, senior investigator and chief of neuromuscular diseases at the NIH’s National Institute on Aging presented a case study to the ALS community to help better understand what we know today and what we are working toward for the future relating to genetics and prevention. ALS prevention has not only been a priority for Traynor, but for the ALS community at large.
Blog
ALS Association
Researcher Spotlight: Lauren Gittings, Ph.D.
Dr. Lauren Gittings, whose award was made possible directly through funds provided by The ALS Association Oregon and SW Washington Chapter, is a postdoctoral fellow from the Sattler Lab at the Barrow Neurological Institute in Phoenix, Arizona. We recently spoke with Lauren to learn more about her and her unique project focused on identifying cellular and molecular changes that underlie cognitive impairment in ALS patients carrying the C9orf72 (C9) repeat expansion mutation.
Blog
ALS Association
Nothing Can Stop Us From Doing Whatever It Takes
We are pleased to share our 2021 Mid-Year Report, detailing the work and achievements that have shaped the first half of this year. You will see that for all of the challenges of the pandemic, we have successfully maintained focus on mission delivery and innovation, pledging to do “whatever it takes” to bring us closer to a cure for ALS and to make ALS a livable disease.
Blog
Florida Chapter / ALS Association
ALS Certified Centers Doing Whatever It Takes to Deliver Critical Care
The ALS Association’s Certified Treatment Centers of Excellence and Recognized Treatment Centers are dedicated to doing whatever it takes to provide compassionate care in a supportive, family-oriented atmosphere to help their patients live longer and stronger lives. One such center is the Phil Smith Neuroscience Institute at Holy Cross Health located in south Florida. “No matter what, the patient always comes first,” says Tina Duane, Regional Program Manager at The ALS Association Florida Chapter.
Blog
ALS Association
Fiscal Stewardship During A Global Pandemic
For nonprofit entities like The ALS Association, the filing of its Form 990 tax return is also an important tool to communicate the good stewardship and judicious financial management the Association has demonstrated while working toward its mission of creating a world without ALS.
Blog
ALS Association
This Is What It Takes
We are on an urgent mission to make ALS a livable disease by 2030, to discover and fund promising treatments and to discover a cure. Our best opportunity to fulfill this promise and to continue delivering in the areas of Care, Advocacy, and Research is to reinvigorate our commitment to work as one. Driven by this belief, we will move from a federated to a unified structure.
Blog
ALS Association
Bryan Stone: Living His Life with ALS
After Bryan was diagnosed with ALS, the Stones immediately adopted the saying, “Today is the best day of the rest of our lives, and we’re going to make the most of it.” And in the days and years since, Bryan has done just that and is an awe-inspiring example of a true ALS hero living his life to the fullest.
Blog
ALS Association
Researcher Spotlight: Sonia Vazquez-Sanchez, Ph.D.
We recently talked with Dr. Sonia Vazquez-Sanchez, postdoctoral fellow from the Cleveland Lab at the Ludwig Institute for Cancer Research at the University of California at San Diego to learn about her unique research focused on RNA binding protein TDP-43 and its effects on ALS.
Blog
ALS Association
Increasing Awareness of ALS in Rural Communities
Health disparities in underserved and rural communities present serious challenges for people living with ALS. Like many of our local chapters around the country, The ALS Association Central and Southern Ohio Chapter and the team at OhioHealth ALS Clinic are working together to change that. In the fall of 2019, Michelle Edwardson, Director of Care Services for the chapter, began working with the team at one of their Certified Centers of Excellence, OhioHealth ALS Clinic, to develop a one-day comprehensive educational symposium for people living with ALS, their caregivers and medical professionals.
Blog
ALS Association
Our Response to the FDA’s Latest Letter and What We’re Doing to Keep Up the Pressure
Following our We Can’t Wait Action meeting with the FDA, we sent a letter to the agency asking it to reaffirm its commitment to the 2019 ALS Guidance and provide us with a detailed report showing how it has implemented the guidance. This week, the ALS Association received a response from Dr. Patrizia Cavazzoni, Director of the Center for Drug Evaluation and Research.
Blog
ALS Association
Spread the Word: It’s Global ALS/MND Awareness Day
Every year on June 21 the International Alliance of ALS/MND Associations celebrates Global ALS Awareness Day, a day of recognition of ALS/MND – a disease that affects people in every country around the globe.

ALS is not unique to the US, it’s a global problem. It does not discriminate based on race, ethnicity, socioeconomic status, or region. People are living with the disease all over the world, and for every person diagnosed, the impact of the disease will forever be felt by their loved ones.
Blog
ALS Association
Health Disparities and ALS
Investigators at Emory University School of Medicine reviewed 23 years of data from 1997-2020 for patients seen at the Emory ALS Center. To allow for adequate analysis of disease survival time, researchers included all patients who self-reported their race as Black or White and symptom onset was before January 1, 2017. A total of 1,298 patients were included in the study, 203 of whom were Black, and 1,095 of whom were White.
Blog
Northern Ohio Chapter
How Does ALS Affect My Life?
This is a personal statement read by Jennifer Bernay on the 2021 virtual hill day held with the ALS Association Northern Ohio Chapter and members of congress representing the state of Ohio.
Blog
ALS Association
ALS Association Wraps Up Virtual Advocacy Conference with Calls on Congress to Act
ALS advocates are pursuing an aggressive set of public policy priorities for people living with ALS and their families. These priorities include increased federal funding for ALS research, creating new pathways for expedited approval of promising treatments including the Promising Pathway Act and ACT for ALS, making permanent expanded access to telehealth, and increasing access to high-quality health care and veteran's benefits.
Blog