This Global ALS/MND Awareness Day, we want to highlight the illuminating story of how the film “LUKi & the Lights” came about, and how it is helping children from every country and culture who have to face ALS/MND as part of their lives.
Paul Seaver, the manager of community engagement and events for the ALS Association who oversees major events in the Boston area, has a personal connection to ALS—having lost his father to the disease in 2013. He shares his story on how raising awareness and funds for ALS became his priority, even before taking on the role professionally.
Since 2021, June 2 has been celebrated as Lou Gehrig Day by Major League Baseball (MLB) in ballparks across the country -- a day to help spread awareness and raise funds for people living with ALS and their families. Here are some of the events happening across the ALS Association to celebrate this legacy that joins together the baseball and ALS communities.
We know finding ways to optimize treatments and care, and increasing access to care, helps people with ALS live the way they want with a better quality of life. That’s where multidisciplinary care comes in.
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.
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.
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.”
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!
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 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.
To help educate the public and raise awareness of the growing issues people with ALS and their families struggle with, ALS Association CEO Calaneet Balas recently shared her views about insurance denials in an op-ed published by the International Business Times, specifically relating to the use of ventilators and assistive technology.
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.
In 2023, unprecedented accomplishments were made in the fight against ALS in care, research, advocacy and more. We can't wait to see what 2024 has in store towards our vision of creating a world without ALS.
While veterans with ALS are entitled to benefits, they don't always receive them. But Earnest Hill, former member of the U.S. Air Force, is dedicating his life to changing that.
Reducing the financial burdens of ALS is part of our commitment to making ALS a livable disease until we can cure it for everyone. We are working hard to mitigate the economic impacts of ALS in a variety of ways. For complex financial or insurance issues, we sometimes turn to our partnership with the Patient Advocate Foundation (PAF).