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One in 50 Americans is a carrier of spinal muscular atrophy (SMA), a rare degenerative neuromuscular disease that impacts 1 in 11,000 births in the United States. SMA robs individuals of their physical strength, greatly impacting their ability to walk, sit without support, transfer independently, and perform other essential functions of everyday life. 

Empowering everyone impacted by SMA to lead independent, fulfilling lives, is the driving force behind Cure SMA, the national organization representing children and adults living with this disease and their families. The organization prioritizes issues related to accessible transportation, financial independence, and access to caregiving and healthcare at the federal level.  

Leading the advocacy front for Cure SMA is a two-person team intensely backed by an active and engaged grassroots network. This community, comprised primarily of adults with SMA and parents of children with SMA, has continually shown that they can effectively engage with lawmakers and share their stories when presented with advocacy opportunities.

The Challenge: Updating Federal Policy to Improve the Financial Stability of People with SMA

One of the most significant recent success stories from Cure SMA is their campaign focused on promoting financial independence for individuals with SMA. Their goal was to mitigate discriminatory policies in federal programs. A specific issue was the unreasonably low asset limits for Supplemental Security Income (SSI) beneficiaries. To maintain eligibility for this key federal program, SSI beneficiaries cannot have more than $2,000 in assets (i.e., savings) or $3,000 for SSI beneficiaries who are married. These current SSI asset limits haven’t been updated since 1984 making it difficult for people with disabilities to save for their futures. 

To address this issue, Cure SMA championed the SSI Savings Penalty Elimination Act, which would raise the asset limits to $10,000 for a single SSI beneficiary and $20,000 for married SSI beneficiaries and index the limits to inflation. “This bipartisan fix would improve the financial stability of individuals with SMA and also end the marriage penalty in the program,” explains Maynard Friesz, vice president of policy and advocacy at Cure SMA.

The Solution: A Grassroots Package to Power Advocacy Efforts

A major part of Cure SMA’s advocacy strategy involves leveraging the VoterVoice platform — especially the email broadcast tool as the primary mechanism to mobilize its base and prompt action around key issues. 

“[VoterVoice is] user-friendly, visual, and looks clean,” says Friesz. “You don’t need to have a ton of training or technical expertise to utilize the product.” 

Additionally, the suite of solutions offered under the FiscalNote umbrella means Cure SMA has a one-stop shop for all its policy and advocacy needs. The organization also relies on Knowlegis to easily contact Congress directly and CQ for federal legislative tracking and news alerts. With all these tools in one place, VoterVoice provides a “nice, all-in-one package” perfect for their needs, Friesz says.

Using VoterVoice, Cure SMA’s advocacy team was quickly able to write and distribute an action alert for the SSI Savings Penalty Elimination Act campaign to a targeted list of 2,225 of its advocates. Cure SMA further shared the campaign link across social media and their Adult Advisory Council — a key group of adults with SMA. 

Cure SMA TikTok screenshotThe campaign’s reach was extensively amplified on social media when the issue resonated with a member of the Adult Advisory Council and other SMA community members whose online popularity significantly extended the campaign’s reach.

VoterVoice Action Center Makes Mobilizing Supporters Frictionless

One content creator couple, called Squirmy and Grubs on YouTube, made a video about the Cure SMA campaign urging their 1.69 million subscribers to take action. 

Cure SMA TikTok screenshot

“Cure SMA has made this easy by putting together a webpage … they have a message written out, you can customize it however you want, you put in where you live and it autom

atically sends it to your representatives,” they explained in the video. “You don’t even have to know who your representatives are. Instead of going and looking up their emails or calling, you can just send this in and it will send it to everyone in your area.”

The link to the campaign went straight to Cure SMA’s action center, powered by VoterVoice, which lets advocates quickly contact their lawmakers. “Because VoterVoice integrates into our existing webpage, the action center page has the same look and feel as the rest of our website,” Friesz says. This makes it seamless for advocates to take action.

The Result: Viral Campaign Yields 180,000 New Advocates

Through these prominent SMA community connections, Cure SMA’s advocacy campaign went viral, not once, but multiple times through these social media posts, mainly on YouTube and TikTok. In just one day, 71,000 messages were sent from advocates to lawmakers through Cure SMA’s action center. 

Cure SMA action center

In total, the campaign has generated over 585,000 messages to Congress in support of the legislation and added more than 180,000 new advocates to the Cure SMA VoterVoice system. 

Some of the hundreds of thousands of people who signed the petition have connections to disability, but most were followers of the social media content creators who agreed that the policy was unfair and needed to be changed. 

“Certainly, the ease of VoterVoice — simply typing in your home address and hitting send on the prewritten message — made it easy for these new supporters to act on an issue that mattered to them,” Friesz says.

The magnitude of messages made lawmakers take notice. “This issue has gotten a lot of attention on the Hill because we have way more people who took action on this alert than we have members of the SMA community,” he adds. 

While Cure SMA acknowledges that not all of its issues will resonate with this new pool of advocates, the organization is intent on taking advantage of this growth in innovative ways. This includes establishing more personal connections with content creators and making it as easy as possible for people to share action alerts with their networks. 

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