How Own Drives NPO Cure SMA To Improve the Lives of Thousands of People

Spinal muscular atrophy (SMA) is a progressive neurodegenerative disease that affects thousands of children and adults across the U.S. While SMA is incurable, Cure SMA is providing practical support programs for the community, funding and directing comprehensive research, and advancing access to high quality care for people living with SMA.

Nonprofit organization (NPO) Cure SMA is on a mission to ensure that everyone living with SMA is empowered to lead independent, successful, and fulfilling lives.

To fulfill that mission, the charity needs to manage its data as effectively as possible. Own provides Cure SMA with essential backup and recovery tools—framed by a user-friendly interface and exceptional customer service.

Amber Ewert Snyder, Senior Director of Database Management at Cure SMA, shares how the NPO chose Own as its solution to hypothetical scenarios the organization needed to address—before any fallout impacted the people that it serves. 

Backup and Recovery
Data Seeding

Serving people nationally

Cure SMA provides unconditional support to patients and their families at every stage in their journey with SMA. To increase the impact of its work, the NPO invests strategically in research to help achieve their mission of a cure.

It should come as no surprise that Cure SMA’s varied programs—from an annual conference to educational events across the U.S.—and widespread community produce a lot of data. But Salesforce is there to support the NPO’s efforts and its data. “All departments at Cure SMA utilize Salesforce,” Amber says. These departments include:

  • Fundraising, which relies on data from an integration with DonorDrive and records of interactions with staff
  • Community Support, which tracks interactions with newly diagnosed patients and families
  • Advocacy, which stores information about contacts participating in advocacy efforts nationwide
  • Marketing, which relies on Marketing Cloud Account Engagement for marketing automation
  • Finance, which uses reports to reconcile data from Salesforce to Sage financial system
  • Patient care and research, which uses Salesforce to store researcher and clinician data, along with critical patient reported data

It’s easy to focus on the great work that charities like Cure SMA do without considering the backend. But their mission ultimately depends on data—and accessing it when needed.

Curing backup and recovery risks

While there wasn't a single critical event that led Cure SMA to look for a backup and recovery solution, plenty of what-ifs popped up following the NPO’s transition to Salesforce.

Cure SMA relied on a managed package within Salesforce until two years ago, when the charity transitioned to using the Salesforce Nonprofit Success Pack (NPSP) directly. Cure SMA previously used one platform for CRM, fundraising, email, advocacy, and surveys, and the move to NPSP meant investment in best-in-class solutions. It also meant integrating disparate data into Salesforce. “Sometimes integrations don’t play nicely together,” Amber explains. “We have a lot of users [in] a system that is new to them, which can sometimes be disastrous if you don’t do it correctly.”

After the transition, Cure SMA began asking a series of what-if questions centered on:

  • Conflicts
  • Integration overwrites
  • Administrative upload errors
  • Inadvertent deletions from users based on accidental permissions 

The charity soon saw that the potential for problems was too high not to have a backup in case of disaster, so they began to look at their options.

Salesforce already enabled Cure SMA’s weekly exports, but the sheer volume of data the NPO brings into Salesforce every day—coupled with actual or potential administrative, user, or integrative changes—is a breeding ground for problems. “Sometimes that weekly comparison just isn’t going to cut it,” Amber highlights. “The spreadsheets are so big that it can take a day just to open them, if your computer’s strong enough.”

That’s not even accounting for comparisons between previous and current exports in case of issues—and figuring out how to import data back in, according to Amber. “We have a lot of lookup relationships that are within our database, which can be tricky when you’re talking about a restore, particularly a manual restore,” she explains.

What would Cure SMA do if it ran into a bad situation? The charity’s tools at the time for a restore simply wouldn’t cut it. Cure SMA needed a third-party solution to ensure that its data wasn’t compromised by accidental overwrite or deletion or upload mistakes. The organization would need to be able to securely compare and restore specific data if a problem did occur. 

The human impact of data loss

When an NPO loses data, the effects can extend far beyond daily operations. For example, the records of individuals with SMA diagnoses contain data like:

  • First touchpoint
  • Event participation records
  • Service provision history
  • Donation history
  • Relationships

If the record was deleted, it would affect not only the parent, but also:

  • Fundraising, as donation histories would be inaccurate
  • Community support, which would no longer see -service provision interactions or how newly diagnosed patients are connecting with the organization
  • Patient care, as key disease data from survey results would no longer be viewable

“Trying to manually restore and rebuild data pulled from different objects would be a nightmare,” Amber emphasizes. Because of the number of lookup records, a manual restore would require manually connecting not just one record but every one of a donor’s donations and each of their survey records to the correct contact.

Some of those records could still exist but they would now be “orphaned” without a central contact to tie them together—making reconciliation of even one contact highly complicated. In the event of accidental deletion of a hundred or thousand records, total data recovery would be virtually impossible, resulting in long-term data loss.

Cure SMA provides tools and services to help those with devastating diagnoses through their journey, and those individuals, in turn, support the cause. So for Cure SMA, backup and recovery aren’t just about numbers and data. Salesforce records the “give and take pieces with the community,” Amber says. “It’s not merely transactional but a real reflection of our relationship with the people with whom we’re working—both those we’re serving and those who are supporting our mission.”

How Own’s solution stands out

After deliberating between five backup and recovery options, Cure SMA narrowed it down to three and chose Own by process of elimination. Amber cited a user-friendly interface and above-and-beyond customer service as the main reasons Cure SMA was happy with Own. 

Two main features prompted Cure SMA to choose Own for backup and recovery:

  1. User-friendly interface: “If I can’t go in and figure out how to run a compare job on my own, that’s not going to work,” Amber highlights. Own efficiently and independently offers a speedy look at data to anyone on the team who needs it.
  2. Customer service: Approachable and helpful points of contact can make all the difference when users can’t solve a problem on their own. “There aren’t a lot of other companies that you would have that type of dedication from a support rep to kind of walk you through from start to finish on an issue,” Amber says.

Initially, Cure SMA chose Own for Backup and Recovery for Salesforce. But the NPO soon explored Sandbox Seeding for Salesforce—now Own Accelerate.

Cure SMA had a full sandbox with Salesforce for development. Following that heavy development period, Cure SMA assessed the cost of a full sandbox. “Even with a nonprofit discount, a full sandbox is a very expensive investment,” Amber highlights.

Without a big budget, the NPO contacted Own and quickly established a solution: “We could use developer boxes and our free partial sandbox—along with seeding—to replace what we were doing with the full sandbox [for] much cheaper.” 

Own’s seeding solution has been ideal for Cure SMA’s development projects with consultants. “We talk about project requirements, they give me an idea of the data they need in the sandbox, and I can reuse a seeding template I’ve already developed or make a new template, and push the data over to the partial sandbox or developer box,” Amber explains. 

Developers created a cascading series of tasks for fundraisers based on how much and when they were fundraising—ensuring Cure SMA was reaching out at the right time with the right message. 

Accelerate helped Cure SMA build a model with a complex lookup setup so they could collect and check the right data on accounts, contacts, donations, and campaigns—all populated to spec. 

Sandbox seeding doesn’t just save time spent focusing on nitty-gritty data: It improves workflows. There’s no need for charity managers to worry about pulling and analyzing reports. As a result, Cure SMA was able to roll out a major project, innovate further, and help improve more lives.

With Accelerate, Cure SMA has been able to improve fundraising by creating cascading tasks from specific data in Salesforce. “We were able to launch a major project to coach fundraisers better, faster, and more efficiently,” Amber says. Before Accelerate, they would’ve had to manually search for data, write up tasks in Salesforce, and send emails or make calls. Now, it’s much more automated.

Own your operations to make your life (and others’) easier

“Own’s been great,” says Amber of Cure SMA’s relying on backup, recovery, and compare tools. 

Six months ago, the Cure SMA patient care team contacted Amber to verify whether changes were made to field values for a set of records. 

Using Own, Amber was able to compare the current data set to confirm that the data was sound. “It was nice to be able to go back and compare past backup records to confirm the accuracy of our data,” Amber says. Not only can Own compare, but it also does so transparently.  

“One of the biggest things is peace of mind,” she says. “Own is security that when the unknown happens, I can at least fix it.” Unanticipated configurations and integration changes might not be in all admins’ control, but the ability to back up data with the right tools and resources is. And when disaster strikes, Own’s there with the guidance NPOs need.

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Backup and Recovery
Data Seeding