The Ice Bucket Challenge—Looking Back to Look Forward

We’ve spent some time here and on social media over the last couple of months looking back at the Ice Bucket Challenge. The occasion, of course, was the fifth anniversary of the Challenge, and the chance to remember and recognize some of the people, companies and organizations who took part in the Challenge and have joined us on the journey to support those with ALS and the quest to find new treatments and, someday, a cure.

But the risk of looking back is that you’ll forget to look forward. So as we move into the next five years since the Ice Bucket Challenge, we wanted to focus on what the dollars contributed by you in our community continue to do to make a difference.

Locally since 2014, we have been able to double our financial support to one ALS Certified Treatment Center, maintain support of a second ALS clinic, and build three new clinical partnerships. We have also used support from the Challenge to extend home modifications grants for people with ALS to gain more accessibility and live comfortably in their home. We’ve expanded funding for caregiver relief grants to allow professional nurses to assist with the demands of caring for a person with ALS. Your support has allowed us to update and restock equipment for our loan closet, including essential equipment to daily living and assistive technology.

And while the bulk of the funds raised have contributed to serving the immediate needs for people with ALS and their families, we have also increased support for our local and state advocacy activities. Your support has also allowed us to have more local ALS advocates—all former caregivers and patient families—travel to DC to visit with senators, representatives and key staff on Capitol Hill to share their stories and further the case for support in-person with these lawmakers.

ALS research is best funded when dollars are pooled and funneled to the most promising projects on a national—and even global—level. As such your contributions locally have been part of the discovery of five new genes associated with ALS and the support of 11 global research collaborations that have already resulted in two new antisense drugs currently in development. Drug trials are expensive and there is no guarantee of success, but since the Ice Bucket Challenge the pace of development has created hope for breakthroughs, thanks in no small part to the awareness the challenge created.

Change never happens overnight. The ALS Association, both locally and nationally, was a lean organization before the Ice Bucket Challenge. But in order to turn what was a moment into a movement, we had to be willing to change. We had to be willing to think not only of what was practical, but what was possible. We needed to think not only what we could do to help people with ALS, but what we wanted to be able to do. That journey has been at times exciting, rewarding, frustrating, empowering, humbling, invigorating and, yes, challenging.

Five years ago, the Ice Bucket Challenge changed the fight against ALS forever. To everyone who took the Challenge then or has joined the fight since we say our sincerest thank you. We hope you will continue with us as we move into the future. Together, we hope someday for a world without ALS, and we are committed to do all we can to help those with ALS as we all work towards that goal. Together, we can truly make the Ice Bucket Challenge something to remember as the beginning of world without ALS.

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