Occupational therapists are key members of the clinic team for individuals living with ALS. As ALS progresses, most people gradually lose their ability to use their hands and their arms as their muscles weaken. Occupational therapists help to provide expertise and creativity to help patients better manage daily activities for as long as possible.

We recently caught up with Lindsay Litterini, volunteer and board member for The ALS Association Western Pennsylvania Chapter, to learn more about her personal connection to ALS and her passion to join the fight against the disease.

The ALS Association is accepting applications for The Jane Calmes ALS Scholarship Fund, which was established in 2019 to support post-high school education for students whose lives have been impacted by ALS. Scholarship recipients receive up to $5,000 per year to help cover the cost of education.

The American Academy of Neurology, The ALS Association and the American Brain Foundation have awarded the 2022 Sheila Essey Award to Matthew Kiernan of the Brain and Mind Centre at the University of Sydney in Australia and a member of the American Academy of Neurology. We recently caught up with Dr. Kiernan on Connecting ALS to discuss advances in ALS research since he first entered the field and how the Essey Award will help move his research forward.

Volunteering for The ALS Association is the longest I’ve ever done anything in my life. There’s always more to be done, but creating an environment, virtual or in-person, where people impacted by ALS feel welcome, empowered, and heard is so important.

On a recent Connecting ALS podcast episode, Maintaining Mobility, we sat down with Shannon Terrell, Doctor of Physical Therapy at the Kaiser ALS clinic in Colorado to learn more about her experience treating people living with ALS and get her thoughts about how she helps her patients manage their mobility.

Heidi Tarr Henson, diagnosed with ALS last spring, shares thoughts about her personal journey living with the disease, how she’s managing her personal changes in mobility and how she strives to just live in the moment.

Home modifications can be permanent or temporary, low­‐tech or extremely sophisticated. To help address the many questions and concerns people and their families often have, The ALS Association has developed a series of educational videos to introduce and explain strategies to remain safe while living with the disease.

It is on us—those who have experienced this disease firsthand, those of us who are living with the disease, those who are serving as caregivers—to determine the value and quality of life with ALS. We need to stand up and object to discriminatory assessments that overlook the most important things that give life value.

Before Brett’s ALS diagnosis, he was an electrician, an outdoorsman and a musician. His hands were his livelihood, creative outlet and unfortunately, the first part of his body to be affected by the disease.

Finding ways to remain independent and prevent potential harms caused by everyday living activities can be a challenge for people living with ALS as their disease progresses. To help address the many questions and concerns people and their families often have, The ALS Association has developed a series of educational videos to introduce and explain strategies to remain safe while living with the disease.

Leaders in the fight against ALS held 250 virtual meetings with members of Congress last week to press for an exponential expansion of federal funding for ALS research and programs next year as part of The ALS Association’s annual fly-in conference.

Peter Sawyer of Mechanicsburg, PA is a military veteran and has been living with ALS for five years. He and his wife and caregiver, Lura, are tireless advocates for The ALS Association’s mission and exemplify true ALS heroes.

The fiscal year 2022 government funding bill Congress passed this week includes nearly $200 million for ALS research and programs.

Decreasing mobility is a challenge faced by every person living with ALS at some point in their disease journey. Finding ways to help people maintain their independence and prevent potential harms caused by everyday living activities is a priority for the ALS community.

The ALS Association has launched a petition calling on public and private health insurers, as well as federal and state governments to prohibit the use of arbitrary, discriminatory value assessments that limit access to ALS drugs.

The ALS community has the opportunity to encourage The Food and Drug Administration (FDA) to approve Amylyx Pharmaceutical’s new drug application for AMX0035.

Carianne “Cari” Meystrik is a true hero to her family, friends and the entire staff at The ALS Association Tennessee Chapter. Cari and her husband Chris had only been married for 6 ½ years when she was diagnosed with ALS in 1998 while pregnant with her fourth child. The couple thought their dreams of growing old together and raising a family were over. Instead, despite the various obstacles brought on by ALS, the Meystrik family has had incredible adventures and made precious memories that carry them through the tough times.

The ALS Association has formally objected to the use of controversial measures to evaluate ALS drugs that can make it harder to find effective new ALS treatments and get them to the ALS community as quickly as possible. These measures have been identified by the National Council on Disability as being inherently discriminatory against people with disabilities.

While good nutrition is important for everyone, it can be very challenging for people living with ALS to maintain a healthy diet due to chewing and swallowing difficulties. Improper nutrition can cause people to feel tired, lower their resistance to infection, speed the loss of muscle mass, cause constipation and lead to a host of other health problems. Below are some important facts to know and tips on maintaining good nutrition despite having ALS.