The ALS Association is a nonprofit association dedicated to finding treatments and a cure for amyotrophic lateral sclerosis (ALS) while empowering people affected by ALS to live their lives to the fullest. The association has used Quorum since 2018 and has grown significantly since then — from working in just a handful of states to all 50.
In addition to their rapid growth, The ALS Association is transitioning to a unified organization, meaning formerly siloed team members are now coming together to form a single team with a single mission.
To learn more about how The ALS Association uses software to stay aligned during this transitional period, we spoke with Dustin Perchal, Director of Advocacy, Engagement & Mobilization. Continue reading to discover how The ALS Association has sent over 30,000 letters to Washington in the first six months of 2023 and secured millions of dollars in research money — all while combining chapters by harnessing the power of Quorum’s suite of tools.
Examining the ALS Association Toolbox
Let’s first define the tools The ALS Association uses before diving into the current state of affairs and how they use them.
Dustin, who leads volunteer advocacy engagement efforts nationwide, is most closely connected to Quorum Grassroots, which empowers organizations to engage, recruit, and activate advocates. The ALS Association also uses Quorum’s State and Federal products to monitor legislation and engage with lawmakers. Those three tools, all under one roof, can connect data in various ways — like in visual reporting dashboards, Outbox (Quorum’s email tool), and Sheets (Quorum’s version of a spreadsheet tool). As you’ll read in the following sections, connectivity is an essential component of the ALS Association’s workflow.
Using Data to Inform Strategy
The ALS Association team is composed of advocacy and public policy experts across the country who all focus on different territories, issues, legislators, and grassroots campaigns. But Dustin and the rest of the team in Washington need to know what is happening on the ground so they can support and strategize to serve the organization as best as possible. To understand what everyone is working on, The ALS Association uses Quorum as a centralized information hub that spans teams and territories.
“There’s always growing pains,” Dustin said. “But Quorum is an asset to help us manage a lot of that as we go forward.”
The ALS Association uses Quorum State and Federal products to track legislation and gather information to create a big-picture overview of activity across territories. This information is then categorized and organized using Quorum Sheets and Dashboards. So far this year, the Association has tagged and is monitoring over 400 bills of interest.
The ALS Association also uses Quorum Grassroots to organize its grassroots supporter base. For example, their team created a dashboard to monitor advocates and their actions to quickly see areas where advocate growth is accelerating or where advocates are taking action. Dustin also uses this information to identify super advocates and unengaged supporters.
To be more specific, The ALS Association’s grassroots dashboard shows the following:
- Total number of advocates on their email list
- New advocates added in 2023
- Actions to Congress
- Actions to state legislators
- Actions to federal agencies
- Actions by type (wrote a letter, sent a Tweet, etc.)
- Actions by state
- Email open rates
- Email click-through rates
They also have state and federal dashboards to quickly see what is happening from a legislative perspective.
While data collection and organization are still a work in progress with the new team structure, using Quorum to house their data — from advocate actions to legislative engagements — creates a clearer picture of the organization’s overall efforts, which helps the team identify strengths and weaknesses in their public affairs strategy.
Growing Grassroots Actions
With a bird’s eye view of what’s happening across states and congressional districts, Dustin uses this information to help team members in the states build out their grassroots engagement strategies.
As the organization unifies, Dustin wants to ensure the transition is seamless for volunteers. “Volunteers only think of us all as The ALS Association,” said Dustin. With that in mind, Dustin said Quorum helps them keep all of their volunteer information and messaging in one place — as opposed to disparate systems in different states.
One of the tools that Dustin finds most helpful is the spreadsheet functionality: Quorum Sheets. “It took me a while when I first came on board to realize the power of Quorum Sheets,” said Dustin. “But that’s where everything comes together.” For example, The ALS Association used Quorum Sheets to collate comments from advocates that they later sent to CMS (Centers for Medicare & Medicaid Services). “It was great to capture and share so many stories quickly.”
Sharing stories has been integral to The ALS Association’s grassroots and legislative efforts. Dustin describes two use cases for advocate stories. First, they use them directly to send to stakeholders. For example, The ALS Association identified an issue where some insurance companies delayed or denied ventilators for people living with ALS. So, they collected stories, removed personal information, and sent them directly to the insurance companies.
The second important use for advocate stories is shaping The ALS Association’s overall messaging. So even if a story isn’t directly used in a campaign, the organization reads all of them, shapes their messaging on their website, newsletters, and even in their messages to Congress. “It has been a good thing to get the pulse of our community,” said Dustin. From there, they can be confident that their messages are genuine. “Because we’ve heard it from the source of people that it’s actually affecting.”
Another benefit of centralizing the team is showing impact on a national scale. By using a tool like Quorum, Dustin and his team can quickly show leadership the effect they are having.
Dustin uses Quorum to calculate how many supporters have taken action, how many people have joined the cause, and more. “We’re able to translate that into real numbers for our CEO and other leadership,” said Dustin. “That wouldn’t be possible without Quorum.”
For example, Dustin can easily share the aforementioned grassroots dashboard, and anyone with a link can see they have logged over 200 meetings, sent over 1 million emails, and had over 40,000 actions taken through their action center so far this year.
Advocate actions and meetings are only part of the story. At the end of the day, what the organization really needs is funding for ALS research.
“We have had a number of state wins,” said Dustin. In previous years they received around $6 million in allocations for ALS. Thanks to the work of a new state team, they were able to increase around $20 million in just their first year. “And we’re hoping to grow,” he continued. “That was just 10 states. And as we get more experience and capacity, we are going to fully engage in all 50 states.”
Outside of state funding, Dustin plans to pursue more federal funding for ALS research — and without a tool like Quorum, “it would be really, really difficult to do that.”