‘Ice Bucket’ Stewardship by Barb Newhouse, President and CEO of The ALS Association (guest article)

In the summer of 2014, the ALS Ice Bucket challenge soaked the world. What was started by three young men living with ALS turned into the greatest social media and philanthropic event of all time.

At least 17 million people dumped ice water on their heads to fight amyotrophic lateral sclerosis (ALS) – a 100 percent fatal disease that takes away a person’s ability to walk, talk, eat, move and eventually breathe – and challenged their friends to do the same.

We immediately embraced the campaign and responded to public interest. Nearly 2.5 million people donated $115 million to The ALS Association, the largest and only nonprofit fighting the disease on every front through research, care services and public policy efforts.

Last week, the two-year anniversary of the challenge, we had some exciting news that received great coverage in all the top-tier media outlets. Ice bucket donations led to the discovery of a new gene, NEK1, now known to be one of the most common genes associated with ALS. We sent an email to all of our donors the day the news broke, continuing our two-year effort to thank, inform and engage people, demonstrating their impact in the fight against this disease.

From the moment the ALS Ice Bucket Challenge started, we were determined to be good stewards of the donations. Thanking was our first priority, and transparency in our communications was paramount.

How did we steward these 2.5 million new donors? How did we meet their expectations?

We initiated a robust thank you strategy including this video, which was emailed out to donors and was also posted to social media. We created thank you graphics and implemented them across all communication channels.

Before we made any decisions as to how the money would be spent, I engaged a panel of advisors made up of people living with the disease, and also listened to many other constituents. Along with our National Board of Trustees, I read countless emails and letters, looked at comments on social media, really taking time to truly understand how our donors wanted their money to be spent.

On October 2, The Association issued a press release detailing some initial Ice Bucket investments: a commitment of $21.7 million to ignite six projects, the bulk of which was to support four collaborative research initiatives. The Association contributed $1 million to one of these initiatives, called Project MinE, which led to the NEK1 discovery I described above.

And since that time, we’ve put out additional infographics and press releases with more details. Our core stewardship infographic includes a breakdown of committed and anticipated spending of the $115 million.

To introduce new donors to the organization they were supporting during the ALS Ice Bucket Challenge, we overhauled our email welcome series, to highlight The ALS Association’s integrated mission and give readers the opportunity to tell us more about themselves and their interest in remaining committed to the fight against ALS in their communities.

Our Development department delved into data and analytics. We spent a lot of time trying to figure out who all these new donors were. Most recently, we developed organizational “personas” to better understand the needs and motivations of The Association’s key constituencies, which will help drive a personalized, constituent-centric communications and marketing strategy.

Finally, we’ve made changes to our donate form, to make it easier for people to give to research or to support their local chapters.

The ALS community is at the center of everything we do. Going above and beyond to meet the needs and expectations of our strongest allies is my top priority. As we continue to grow, together, my mission is to ensure that The ALS Association remains the leading resource of information and support for the people we are here to serve.

Barb Newhouse is the President and CEO of The ALS Association. Barb holds a bachelor degree in social work and a master’s degree in health care administration. She received a certificate with the Leadership Institute on Aging in 1994 and has attended various continuing education courses with the Kellogg School of Non-Profit. Barb has recently completed a Certificate in Leadership program through the University of Notre Dame on leading transformational organizations. Throughout her career, she has served on numerous non-profit boards of directors including chairing both a community mental health center as well as the Governor’s Conference on Alzheimer’s disease for the state of Iowa.