In the summer of 2014, millions of people around the world dumped buckets of ice on their heads to raise awareness and funds for ALS Association—a nonprofit operating throughout the United States to fight amyotrophic lateral sclerosis (also known as Lou Gehrig’s Disease).
It was an unprecedented campaign—the Association received $115 million in just six weeks and acquired 2.5 million new donors, mostly millennials. At least $100 million more was raised for other ALS organizations around the world.
But the Ice Bucket Challenge (IBC) was also probably the most important moment in the history of fighting ALS since Lou Gehrig (the baseball player whose popularity gave the disease its common name) made his farewell speech more than 75 years ago. Why? Because it presented leaders, staff members, and other stakeholders in this fight with what I call a “good crisis.” First, we had to figure out how best to allocate all that money—and as those in the nonprofit world will attest, this is not nearly as easy as it may sound. Second, we had to decide what the IBC would ultimately mean for us. Would we look back on it as a one-time thing and continue to work in the same way we always had? Or could it be a catalyst for all of us fighting ALS to advance our efforts, together?
Building trust internally
Prior to the IBC, within our organization, there was a lot of distrust between the national office and the chapters, and among chapters, themselves (we are a federated organization, with 39 chapters serving all 50 states). But the wild success of the challenge gave us a platform to enter into new, forward-looking discussions about the potential of working together—really working together. It showed us a new path forward—a new and powerful way to tell our organization’s story, and a compelling reason to work to build trust internally.
Fast forward to the present, and we now have an executive leadership council made up of chapter heads, who work together on Association-wide matters. We also have a new strategic plan, forged by chapter and national staff, with input from dedicated volunteers. Our board of trustees and our board of representatives approved the plan, which includes formalizing the Association’s commitment to collaborative fundraising, at our annual leadership conference in February this year. We have encountered bumps on the road to change, but I believe we’re making good progress.
Advancing external collaboration
The IBC also gave us a new platform for our work with other organizations fighting ALS. We have used IBC donations to fund several global research collaborations, and some are already showing promising results. For example, IBC funds helped us bring together a diverse set of stakeholders and organizations to provide written guidance to the Food and Drug Administration to help speed new ALS treatments through the drug approval pipeline. We also brought together all the ALS organizations for Collaboration for a Cure, our working group to tackle issues facing the entire ALS community.
Working together faster
Our organization is big, and our governing structure is complex, and change takes time. But those of us working in this field are under constant pressure to effect change more quickly. People living with ALS may not have the luxury of time—only two to five years on average. So we need to continue to raise money smarter and faster to support much-needed care services and provide research funds. To that end, we are also plowing forward with several new collaborative fundraising pilots with our chapters. One such pilot has received a great deal of national media attention lately. Pete Frates Home Health Initiative, named in honor of one of the IBC co-founders, has recently been receiving national media attention. Working with private donors and our Massachusetts chapter, we will be covering the home health care costs for some individuals living with ALS in that chapter. We hope to expand the program nationally very soon. It is an example of outside-the-box thinking—developed collaboratively—to tackle the high costs of home health care, a major problem for people living with ALS.
The trust we built by working together on the “good crisis” of the IBC continues to propel our entire organization forward. I am glad of that. But looking back, I wish it hadn’t taken this kind of event to spur our new collaborative approach. I urge other nonprofit organizations to seek out collaborative opportunities in advance of the triggers of major events—good or bad. Collaboration is really the only way we can solve the challenges that face us.
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Read more stories by Barbara Newhouse.