Dr. Ileana Howard is the Medical Co-Director of VA Puget Sound, an ALS Association Certified Treatment Center of Excellence, and will be joining us at our ALS Nexus conference to share her insights while exploring actionable steps to dismantle barriers to access, from advocating for policy changes to fostering community partnerships, to ensure everyone living with ALS has access to state-of-the-art care.

While veterans with ALS are entitled to benefits, they don't always receive them. But Earnest Hill, former member of the U.S. Air Force, is dedicating his life to changing that.

The ALS Association has launched My ALS Journey™, a new interactive, web-based tool that allows people living with ALS to take control of their journey with the disease. Developed in consultation with the ALS community, My ALS Journey is designed to put individuals living with ALS in the driver’s seat of their own health care journey.

The FDA announced it has granted accelerated approval to tofersen, a treatment for people living with mutations of the SOD1 gene. This is a significant victory for the ALS community and our efforts to make ALS livable for everyone, everywhere, until we can cure it.  

In recognition of National Volunteer Week, we are shining a spotlight on some of The ALS Association’s amazing, dedicated volunteers, and highlighting the incredible work they are doing to support our mission.

The ALS Association spent over $2 million helping fund the development and clinical trial of AMX0035. When the results of that trial showed it was safe and effective in treating ALS, the ALS Association led an advocacy campaign to push the FDA to approve the drug. After two years of advocacy, the FDA finally approved AMX0035. 

We spoke with Dr. Melinda Kavanaugh, clinical social worker and associate professor at the University of Wisconsin-Milwaukee, to understand more about young caregivers and the potential harms caused by the lack of quality of sleep they receive and what can we do about it.

The recent ruling by the Supreme Court to overturn Roe v. Wade is a wakeup call for all of us who care about the rights of people being able to make decisions about their own healthcare. No matter your political perspective or leanings, any erosion of the rights for individuals and their loved ones to set the course for their own treatment in consultation with their medical professionals is of great concern.

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.

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.

Through word of mouth, Stuart and his wife Marcia found five or six families in their community who were also dealing with the impact of an ALS diagnosis. They started an informal support group. The group started working with the chapter relations team at The ALS Association and formed The ALS Association Alabama Chapter.

Often ALS takes away a person’s ability to swallow safely, and if so maintaining adequate nutrition can become a challenge for people living with ALS and their caregivers. And finding delicious family friendly recipes for all to enjoy during the holidays can be difficult.

You may know the old saying “ship shape.” In many ways, that old reference to order and fitness defined Yvette Wilson’s life. She joined the United States Navy immediately after high school and the discipline that experience gave her has shaped her life in many ways. Even after she left the Navy, she lived an orderly life, blessed with good health and a loving family in Albuquerque, New Mexico.

All signs pointed to a wonderful future, until one day she started experiencing a heaviness in her feet.

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.

November 1st marks the beginning of National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Caregiving for someone with ALS has a broad and lasting impact, in both daily life and long-term well-being.

Navigating the world of health care, insurance, and especially Medicare, can be very complicated and overwhelming. Making the right decisions when it comes to healthcare and understanding all of your options is critical for everyone, but even more so for people living with ALS.

People with ALS and their caregivers face a substantial burden accessing and understanding insurance coverage and paying for medical treatments and services, causing high stress, added work burden and debt for the ALS community.

With many ALS drugs now in phase II and III clinical trials, The ALS Association is considering strategies that will ensure any new treatments are accessible and affordable. We used our second ALS Roundtable to explore several important questions for our community including: How will these new therapies get paid for? How can people access to them? How long will it take to get access?

People living with ALS eventually lose the ability to speak. That means that preserving channels of communication is an important component of enhancing quality of life. The ALS Association - DC/MD/VA Chapter took this to heart when they initiated The Esther Lerner Brenner ALS Assistive Technology Lab in Maryland, which is designed to help people living with ALS communicate effectively for as long as possible.

People with ALS come first in everything we do. The ALS Association is dedicated to providing those fighting ALS, their families, and friends with the critical information, support, and resources necessary to live a full life and better meet daily challenges.