With the Ice Bucket Challenge’s resurgence since Chris Johnson’s ALS announcement, I have seen a lot of negative comments about how the money was used. Most of the complaints center around overhead costs and lack of progress toward a cure. The ire is primarily leveled at the ALS Association who was a primary beneficiary of the original Ice Bucket Challenge ten years ago. While I think the issues of overhead costs are real, they are exasperated by the lack of progress toward a cure.
Looking back
I want to step back and look at this. ALS awareness was increased by the Ice Bucket Challenge. A lot of research has been done. Many more support organizations have been created since then. Local support groups and certified ALS Clinics increased as well. Were funds mishandled? Most likely. Are we better off than before? Absolutely!
Research, advocacy, livability
The work being done by multiple organizations covers a wide spectrum from research to quality of life. Because ALS is such a sneaky and devastating disease, research is primarily focused on two areas, diagnosis and treatment. Great strides have been made in diagnosing and treating familial ALS which is genetically passed down. However, this represents a small percentage of people with ALS.
The rest like me have sporadic ALS. There’s no known cause. Diagnosis is usually done through a process of elimination. “You must have ALS because you don’t have these other diseases.” This is a huge problem to be resolved. It hampers treatment, research and participation in clinical trials. Because of this difficulty, most treatments or drugs are focused on slowing progression which is typically measured in months. Even then the effects are estimated not guaranteed. Overall, it’s annoying.
Many of these organizations also do advocacy work. For example, the Act for ALS Reauthorization passed in Congress. This allocates more funding for research. One of the big things that happened in the past ten years was shortening the time window for the approval of Social Security Disability and Medicare benefits from six months to less than a month. That is genuinely helpful for those with rapid progression who lose their jobs and insurance.
Finally, much has been done to make living with ALS more livable. Organizations like Live Like Lou, Team Gleason, and Bridging Voice do so much for those of us living with ALS. They support voice preservation, mobility solutions, and home accessibility. They and other organizations have done much to improve the quality of life for those of us with ALS.
ALS awareness
Events like the Ice Bucket Challenge have increased the general visibility of ALS. Sadly, announcements from famous people like Eric Dane and Chris Johnson bring news cycle awareness to the disease. I have seen some bitter responses to their announcements because there are some people who are disappointed that awareness of our disease requires these announcements.
I’m sad for them, but I’m glad they have chosen to use their popularity to increase awareness. I do what I can, but my reach is not as great as theirs.
Doing my part
I am participating in two fundraising events – Walk to Defeat ALS and the Ice Bucket Challenge. Let’s start with the Walk to Defeat ALS.
The Walk to Defeat ALS supports the ALS Association. In our case, we are raising funds to support research, advocacy, and our Kentucky ALS Chapter. They have helped us locally with equipment and support groups. I am also participating in the Creative Pursuits program. I am a part of the Merry Meeples Digital Board Game Club and For the Win Sports Club. We have also joined a couple of virtual museum tours. Your support of the Walk makes this possible.
Next, I kicked off the Ice Bucket Challenge on Saturday, August 8, 2026. I am supporting Bridging Voice with the challenge. Bridging Voice helps those of us who have ALS keep our voice and our ability to communicate. They worked with ElevenLabs to bring free voice clones to the ALS community. I have a voice clone because of them. Your support of the Ice Bucket Challenge will bring voices to those who can’t speak.
They aren’t perfect, but…
While nonprofit organizations aren’t perfect, progress is being made. Research for an incredibly hard to diagnose disease continues to progress. Advocacy efforts raise awareness and federal funding. Livability improves each year and is the biggest impact for those of us living with the disease right now. Thank you for your support.
