Selina Lavonne Rambo wrote the book "Grandpa's Wise Words" for her children to remember the good times they've experienced with their grandpa even though he was facing ALS. She hopes to share with other families with young kids who are affected by the disease.

Before the Ice Bucket Challenge, the lack of ALS awareness only added to the struggle individuals and their families face. The needs of people living with ALS were not well understood and services were often lacking. After the Challenge, people knew what ALS was, but we still need more support.

ALS took away Matt Fleming's ability to run, something that he LOVED to do. But ALS can not stop Matt from moving forward or pushing others to move forward in the fight against the disease.

One of the leading researchers working to better understand what is going on at the earliest stages of the disease is Michael Benatar, M.D., Ph.D., a professor of neurology at the University of Miami. Through his research, he is identifying biomarkers that could be used to predict who is likely to develop ALS and when, as well as helping develop treatments that could potentially delay or prevent the onset of symptoms. And we are thrilled to announce he will be joining us at ALS Nexus in July to talk about this very important work.

You can sum up the kind of pediatrician Jim Plews-Ogan was with two words: house calls. During his more than 20 years of practice for adolescents and children in Charlottesville, Virginia, Jim still made house calls when needed as part of the personalized care he offered. Not surprisingly, folks like that end up having deep ties to the community they serve. Even a quick trip to the grocery store for Jim and his wife Peggy often means multiple stops to chat with parents of patients and former patients.

Prior to the Ice Bucket Challenge, there was only one available treatment option for people living with ALS, as well as a few other therapies to help manage symptoms. In the last 10 years, we have seen an influx of researchers and companies striving to discover new treatments and cures for ALS. The result of these efforts has been six FDA approvals for new drugs and new drug formulations. Let's see new treatments until we can find a cure.

Shelby Kinsey graduated from college in December 2022 and took a job working at a bank while she figured out what she “wanted to be when she grew up.” Ironically, she fell in love with the industry and decided to pursue a master’s degree in finance. Until ALS came along.

Nothing has brought more ALS awareness like the Ice Bucket Challenge during the summer of 2014. The viral sensation spanned the globe, forever changing the future and trajectory of ALS. And the awareness and funds generated by the social media phenomena put us on a path to end this disease.

After being the primary caregiver to his wife of 30 years before she passed away from disease in 2021, Bob Scott wasn’t sure he ever wanted to have anything to do with the letters “ALS” again. But a burning in his gut told him that he should do something to help; that he could try and make it all a bit more “fair.”

In honor of National Volunteer Month, we are recognizing Dylan White for giving his time to photography and video production for us. Dylan's father was diagnosed with ALS in 2017, and he soon realized he wanted to use his skills to give back to the ALS community.

A proposed new Department of Transportation (DOT) rule, spearheaded by Transportation Secretary Pete Buttigieg, aims to address the issue of air travel for passengers who rely on wheelchairs, including people living with ALS.

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.

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.

Dana Julian's great grandfather passed away from ALS and is part of her "why" she volunteers for the cause. Read more about how she got involved with the ALS Association.

Renovation Hunters joined the fight against ALS when they took on an extensive cabin renovation to help a family impacted by the disease in Pennsylvania. The series includes three exciting episodes of the reno beginning tomorrow, April 5, at 8:30 p.m. on the Outdoor Channel. Read more about the family’s journey and don’t forget to tune in to watch!

In recognition of National Volunteer Month, we’re shining a spotlight on the many different ways you can get involved by providing help, support, and hope to the ALS community. Volunteering is a powerful way to make a positive impact in any community. And when it comes to supporting people impacted by ALS, each and every volunteer action makes a difference.

This month, Calaneet Balas, ALS Association President and CEO, and Scott Kauffman, Association Board Chair, joined several board members with ALS and some who have lost loved ones to the disease to meet with members of Congress in House and Senate leadership positions and participate on appropriations committees that will decide how federal dollars are to be spent.

ALS presents its own set of nutritional challenges that must be addressed when considering what makes up a healthy diet, and these challenges change as the disease progresses. As we approach the end of National Nutrition Month, we wanted to take a look at some of the many nutritional needs for people living with ALS and how they are sometimes different.

Thanks to our Seed Grant Program, 16 ALS researchers now have up to $50,000 each to gather the preliminary data they need to propel their research in promising new directions, which can ultimately lead to new treatment options, approaches that optimize current care, or ways to help prevent ALS altogether.

ALS Nexus brings together the perspectives of the ALS community to connect, collaborate, and change the future of ALS. This is more than a conference – it’s an opportunity to spark new ideas and accelerate progress towards our goal of making ALS a livable disease until we can cure it.