We've shared the story of Wendy and Michael Wilson, a family affected by ALS; but, they both still volunteer their time with us, serving on the local community leadership council in Oklahoma and other committees focused on care services and caregiving.

Today is Rare Disease Day, an event that takes place worldwide, typically on the last day of February each year, to help raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. In recognition today, Kristina shares what it’s like to be a ALS caregiver for her husband, Lamar, and her unique perspective on the rarity of ALS.

There is no doubt that 2023 saw significant breakthroughs in advocacy, care and research. Here's a look at the top ten blogs of the year that covered it all.

Wendy Wilson shares the story of her husband, Michael: his ALS diagnosis and how their family loves, laughs together and supports each other through this journey.

For people living with ALS and their families, the holiday season can bring its own set of challenges, both physical and emotional. But the season can still be a time of togetherness, peace and joy. Here are some suggestions to help manage changes and enjoy this holiday season.

No two cases of ALS are the same, nor are any two ALS caregiver experiences. While there is no one-size-fits-all answer to every caregiver question, there is often much to be learned from people who are, or who have been, a caregiver for someone with ALS. As National Family Caregivers Month comes to a close, we wanted to take a moment to highlight some of the advice, resources, and support available for ALS caregivers all year long.

When Tony got diagnosed with ALS, he and his wife Karen turned to each other to figure out their path forward, and they found they were better when they could face it together. The role of ALS caregiver wasn’t what Karen had planned, but together with Tony and their family, they set about figuring out this “new normal.”

For someone facing the challenge of becoming an ALS caregiver, there are many paths to gaining the knowledge and experiences they need to care for someone with the disease. Finding accurate and timely information can play a key role in equipping those impacted by an ALS diagnosis with the skills they need to provide the best possible quality care.

Over the past years we’ve had many conversations and interviews with ALS caregivers, and while no two experiences are ever alike, there are often similarities and storylines throughout. In recognition of National Family Caregivers Month, we thought we would share some of these caregiver stories and advice we’ve collected along the way.

For National Family Caregivers Month, we are featuring David and Laura DuBois. David is living with ALS, and his wife Laura is his primary caregiver. As simple as it might sound, their conscious decision to truly LIVE with ALS is what has allowed them to face each challenge and each day, together.

November 1 marks the beginning of National Family Caregivers Month. There are many ways to help caregivers and families impacted by ALS. The ALS Association put together a list of ten ways to make a difference in the lives of family caregivers.

For National Respiratory Care Week, The ALS Association has compiled a list of the wide variety of free, reliable information and resources for everyone affected by ALS.

We recently launched Nationwide Connect, monthly online support groups for both male and female ALS caregivers designed with one thing in mind—enhancing quality of life and supporting families impacted by ALS regardless of where they live. They follow support group best practices and join people together who are dealing with similar experiences.

Medicare open enrollment begins Sunday, October 15, the annual period when individuals may add, drop, or make changes to their health insurance coverage, with selections remaining in effect for the next full year. After the open enrollment window closes on December 7, plan changes can only be made after a qualifying life event.

ALS is a very different disease. Therefore physical therapy treatment has to be different than what you would consider typical physical therapy. You can't fight it off or beat it with exercising. In fact, the wrong kind of exercising can actually make things worse.

This week is Malnutrition Awareness Week, an opportunity to remind everyone of the role proper nutrition plays in a person’s health and the importance of early detection, intervention and treatment of malnutrition for people living with ALS and their caregivers.

As you may have heard, we are going through a period of transition and I just want to take a moment to explain what is happening. Most of you want to know that we will continue to provide high-quality care services, state and national advocacy, and global ALS research. Let me reassure you -- we will. In fact, we will now better be able to do those things -- for everyone, everywhere.

We talked with Dr. Caiwei Guo, a postdoctoral fellow at the Stanford University School of Medicine, to learn more about her research, as well as her interests outside the lab.

Melissa Enfinger, a care services director for The ALS Association based in Alabama, knows the importance of mental health when dealing with ALS. Melissa recently joined us on a Connecting ALS podcast episode to help us better understand the role wellness plays in making ALS livable and improving a person’s quality of life and share information about a mental health networking program she is spearheading to help the ALS community.

August is National Wellness Month. Making a concerted effort to keep your mind healthy is just as important as keeping your body healthy, particularly for people living with ALS and their caregivers.