March 23, 2020 – We have received many questions about COVID-19 and its impact on people with ALS, their families, and their caregivers. We convened a panel of volunteers and staff to answer these questions – their bios are at the bottom. This situation is rapidly changing. We will update this FAQ as we receive more questions and more current information.

In summer 2014, as the ALS Ice Bucket Challenge was raising unprecedented awareness and funds for the fight against the disease, Liz Murray did not know that she was about to become part of the ALS community. Her diagnosis was confirmed later that year. 

When Christian James was heading to the neurologist at the University of Cincinnati Medical Center, his son, a student at UC at the time, met up with him for the appointment.

For the most recent information about the coronavirus (COVID-19), The ALS Association recommends that you reference the websites for the Centers for Disease Control (CDC) and the World Health Organization (WHO).

Joel Shamaskin spent 30 years caring for others as a primary care physician before his ALS diagnosis rushed him into retirement. Over the course of his career he had cared for some patients who had the disease, so by the time he received confirmation of his diagnosis, he and his wife Ann, who was a primary care physician as well, felt like they already knew. But ALS hasn’t taken away his desire to care for others.

Learning that you should consider a feeding tube can be overwhelming. It is a lot to take in, particularly in combination with the many medical issues that come with an ALS diagnosis. It is common for patients to be hesitant about it, but often, once they see the benefits of tube feeding, they often regret not making the decision sooner.

This week, Time reported that flu patterns have been unusual this season, which means it is a good time to talk about ALS and the flu. People with ALS often experience a wide variety of challenges related to weakened swallowing and respiratory muscles, including difficulty managing saliva, coughing, and clearing secretions. Consequently, it’s imperative to take steps to avoid any respiratory infections, especially the flu.

After a lifetime of participating in and leading two-a-day practice sessions, as a running back at the University of Alabama and the NFL, and later becoming a strength and conditioning coach in the NFL, Kerry Goode knew something was wrong when he couldn’t pick up a box.

As 2019 winds down, we look back on some of the important progress made this year in the fight to change the future of ALS. With the hard work and help from so many across the ALS community, the ALS Association was able to make great strides in our key mission areas, bringing us one step closer to our vision of a world without ALS.

Our home has always been filled with family, friends, and joyful celebrations during the holiday season. It’s a time to connect with loved ones and create lasting memories. After my dad was diagnosed with ALS in March of 2017, creating holiday memories became especially important for our family. The average life expectancy for someone with this disease is 2 to 5 years, so we understand that every moment we spend together is precious.

The ALS Association, our partner ALS organizations, and the wider ALS community are all hopeful that several therapies currently in Phase 3 clinical trials will prove to be successful in slowing, halting, or reversing ALS. One of the therapies now in Phase 3 trials, NurOwn, has been the subject of considerable discussion on social media. Some of what is being stated on social media is unfortunately not accurate, and risks misleading people with ALS and their caregivers.

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?

November is National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Throughout the month we have been sharing stories of caregivers in the ALS community. Caregiving is a full-time job, and many caregivers also maintain full time jobs while dealing with the financial and emotional stress that comes with being a caregiver.

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.

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.

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.

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.

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.

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.

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.