Ten years ago, a global phenomenon came in the form of millions of people recording themselves online pouring a bucket filled with ice water on themselves to spread awareness about ALS. This quirky trend resulted in more ALS treatment clinics, millions of dollars raised to support people living with ALS, and a heightened sense of awareness towards this disease that was unlike anything we had ever seen. United Way of Greater St. Louis (UWGSL) partners with our local ALS Association who benefitted from this heightened sense of awareness. ALS Association Territory Executive, Josh Nuss reflects on the effectiveness of the Ice Bucket Challenge and looks forward to continuing to combat the struggles that face people living with ALS.
What are some of the struggles that people with ALS face and what does the ALS Association do to help?
I think some of the struggles folks with ALS have is trying to find out what they need and what their progression will look like. Obviously, there’s a financial struggle that comes with ALS, it can cost upwards of $250,000 a year to help pay and care for someone living with ALS.
There’s a need for help with navigating people’s journey who are living with ALS and that is where the ALS Association comes in. We have dedicated staff both locally and across the country that will help guide them through their journey with ALS and provide the services that we can.
This year marks the 10-year anniversary of the ALS Ice Bucket Challenge, how much did this phenomenon help in creating more awareness about ALS?
The ALS Ice Bucket Challenge was a game changer in the fight against ALS. It moved mountains, since then, we’ve funded over $154 million in ALS research in at least 13 countries. We’ve discovered two new treatments since then, we’ve more than doubled the number of ALS clinics since then. We had 100 before the Ice Bucket Challenge and now we’re around 260 clinics across the country, there have also been 12 new genes that have been identified. That money was very valuable when it came to moving the needle in the ALS community.
The awareness was also just as big as the funding because ALS is a rare disease and so for celebrities and everybody across the country to get involved was really special. I think about 17 million people dumped ice water on their heads at that time. For folks with ALS to see people doing that just showed them that they are not alone and that there are people out there that want to support and help them.
How can we build off the momentum that the ALS Ice Bucket Challenge created and continue to accelerate the fight against ALS?
The ALS Ice Bucket Challenge was such an organic phenomenon and we’ve had people throughout the years still doing their own Ice Bucket Challenges, or maybe doing a spinoff of it. We have an event called the CEO Soak and other different ones across the country.
We want to see people continue to engage to help raise funds and bring even more awareness for people living with ALS. We’re kicking off some events toward the end of June/early July so you’ll probably be seeing them in your local areas that you can get involved in.
ALS Awareness Day is coming up, for someone who is looking to learn more about ALS, what is one of the most important things that you would like them to know?
That its just a devastating disease. It’s 100% fatal and there’s currently no cure for ALS. We have a couple drugs that help maybe slow the progression of ALS, but right now we continue to need support to help make ALS a livable disease for everyone, everywhere until we can cure it. That’s our mission right now – helping folks live longer with a better quality of life. So, any way people can engage in the fight against ALS – whether it’s joining a local walk, giving through direct mail, or giving through United Way – all these direct ways are going to help us fight for folks living with ALS across the country and here in the local St. Louis market.
UWGSL prioritizes the importance of making sure our neighbors have access to resources needed for health and wellness. How much has UWGSL’s support and funding helped you all in your efforts to ensure the ALS Association has the capacity to help people living with ALS?
We couldn’t do what we do without the support of organizations like United Way and the people who give to United Way. That’s how we help fund our programming whether its through the staff that are on the ground helping educate and deliver the services we provide to the families, helping to facilitate our support groups, funding our ALS clinics, funding research, etc. So, folks giving to United Way helps the ALS Association greatly and we couldn’t do it without them.
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