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.
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 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.
The ALS Association has awarded $3.6 million to four interventional trials through its new Clinical Trial Awards program. The Clinical Trial Awards program is open to industry and academic investigators proposing novel or repositioning approaches for ALS.
In 2016, Troy Fields had everything going for him. A beautiful and growing family. A highly successful and satisfying career that allowed him to travel internationally. But he also started to notice signs that something wasn’t quite right. After treatment for cancer and a battery of other tests, his ALS diagnosis was eventually confirmed. Instead of focusing on what he was going to lose, Troy opted to channel his energies to be an agent of change for the ALS community.
Spring feels like it’s just around the corner for most of us, and that means ALS communities nationwide are preparing to kick off their 2022 Walk to Defeat ALS® events. And if the hard work and dedication we see each year from our incredible volunteers and families is any indication, it’s sure to be yet another amazing opportunity to join the fight for all those impacted by ALS.
Heidi Tarr Henson, diagnosed with ALS last spring, shares thoughts about her personal journey living with the disease, what courage means to her and how she strives every day to embrace and live by this powerful virtue.
Connecting ALS recently sat down with Sarah Trott to learn more about her experience as an ALS caregiver for her father who recently lost his battle with ALS, and better understand the challenges with grief she has experienced and the steps she is taking to overcome her terrible loss.
To help make the most of your Super Bowl watch party this year, we are providing you with a few highly nutritious, delicious, easy-to-swallow Super Bowl staples the whole family will enjoy!
The National Institute of Neurological Disorders and Stroke (NINDS) issued a request for input recently to help guide its work supporting ALS research. The ALS Association is submitting input telling the agency that speed matters. We are encouraging NINDS and the rest of NIH to focus to find ways to use research to advance the health of people with ALS as quickly as possible.
Each year on February 11, the world celebrates International Day of Women and Girls in Science Day. This year we’re shining a spotlight on Dr. Allison Ebert, Ph.D., Leadership Team Member at The ALS Association Wisconsin Chapter & professor at the Medical College of Wisconsin. Dr. Ebert breaks down the challenges of finding effective therapies for people living with ALS and the important work happening in her lab.
In most people’s journey living with ALS, they will be faced with the decision of using a feeding tube to help maintain proper nutrition and enhance their quality of life. The following resources have been developed to provide you with the knowledge you need to help make this decision with the minimum amount of stress and difficulty.
The Institute of Clinical and Economic Review, commonly known as ICER, has opened a review of AMX0035 to determine the cost-effectiveness of the drug. The ALS Association is committed to making sure ICER’s review does not discriminate against people with ALS and that its analysis does not prevent people with ALS from accessing promising treatments.
Despite all that ALS has taken from me, I still try to maintain a positive attitude and try to enjoy each day. I have much to be thankful for. Instead of dwelling on things I can no longer do, I try to focus my time and energy on things I can still do.
We recently spoke with Joan and Tony Nolting about their personal experience living with ALS and attending an ALS Association Certified Center of Excellence. After experiencing mild breathing symptoms and slurred speech, Tony was diagnosed with bulbar onset ALS in September of 2020, just five days after his 63rd birthday.
My husband Russ and I were married in 1984 and were raising our boys Kyle and Dylan in the home Russ and my father had built together. Life was good. Until ALS upended everything.
