Meet The Cute Syndrome Foundation, a nonprofit that uses Hopin to support families affected by a rare pediatric disorder

Meet The Cute Syndrome Foundation, a nonprofit that uses Hopin to support families affected by a rare pediatric disorder

Building a support system on Hopin

Founded in 2013, The Cute Syndrome Foundation is an organization that supports families and children who are affected by a rare pediatric disorder called SCN8A. Since 2015, the organization has hosted an annual gathering for families, researchers, and clinicians.

In 2020, however, The Cute Syndrome Foundation had to change its event strategy. Founder Hillary Savoie didn’t want to forgo the beloved community gathering, so she started looking for a virtual solution. After extensive research, she settled on Hopin.

After seeing how easy to use and intuitive Hopin is, Hillary realized the event management platform could have other applications beyond the Foundation’s annual gathering.

"We turned to Hopin to hold that [first] event, but what was really cool for us was that it started to offer all sorts of other opportunities to come together as a community." –Hillary Savoie, Founder, The Cute Syndrome Foundation

Event organizers can easily duplicate and adjust existing events on Hopin, so Hillary quickly built several smaller event series, including one intended to help educate families on how to take part in upcoming SCN8A clinical trials and another that brought families together to share advice and support with one another.

Woman holding coffee cup speaking with young child in wheelchair
Woman holding coffee cup speaking with young child in wheelchair

"One of the easiest things about building events in Hopin was that we were able to really just create an event, duplicate it, and grow it modularly in ways that worked for us."

Hillary Savoie
Founder, The Cute Syndrome Foundation

Creating a safe space for conversation

Due to the nature of SCN8A, families don't have much free time and are often exhausted. With that in mind, Hillary and her team were careful not to overcomplicate things. They made event access and engagement as simple as possible, primarily using sessions in Hopin's platform. They also customized the look and feel of the platform to keep the experience on-brand and ensure families felt like they were in a safe space.

"Our families are exhausted. They're beat up. They are literally sometimes joining these events from ICU bedsides, so we really plan things in a very streamlined way. We are not using a lot of extra features, [we want to be] as straight down the path as we possibly can be." –Hillary Savoie, Founder, The Cute Syndrome Foundation

By focusing on sessions within the Hopin platform,  Hillary and her team achieved impressive engagement. The intimate, simple setting allowed for the perfect balance of education and engagement. As experts gave presentations on complex medical subjects, families could ask questions directly in the chat and get answers in real-time. 

The virtual format also gave medical professionals and families affected by SCN8A the opportunity to engage directly with one another. For example, during The Cute Syndrome Foundation’s annual gathering, Hillary and her team set up a booth in the event's expo area that featured videos of 35 families affected by SCN8A saying hello. For a medical researcher who has never met a child impacted by their work, this was an incredibly powerful moment. The booth was one of the most popular areas of the event.

"Had we not been so comfortable on the platform, I don't think these conversations could have happened as easily [...] it was informative, but it was real and human." –Hillary Savoie, Founder, The Cute Syndrome Foundation
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The Cute Syndrome Foundation used the following Hopin features to support families:

  • Sessions: This feature allowed speakers to engage directly with families in an intimate and supportive setting. Hillary's team even used the feature to host a virtual cocktail hour.
  • Expo: During the annual gathering, attendees gathered in Hopin’s expo area to chat and watch family videos together in a fun, informal lounge-type setting. 
  • Chat: Hopin's robust chat functionality allowed families to ask hard questions in real-time. This is something attendees might have shied away from at a live event.
  • Recording: Each session was easily recorded on Hopin, so event attendees could rewatch all their favorite moments. The Cute Syndrome Foundation also used a variety of channels to distribute event content to families who couldn’t attend the events.
  • Customization: Hillary and her team easily customized each event to keep everything on-brand and make sure families felt comfortable.
  • Analytics: With Hopin's reporting tools, Hillary was able to show her board and sponsors key data on engagement and attendance. This helped improve sponsorship revenue and inform future event strategy.

"Our families are engaging more. They're trusting each other more. They're sharing more information. And not only that, but their expectations of the actionability of sharing that information has gone up. Their engagement in things outside of Hopin, in our other programs has gone up."

Hillary Savoie
Founder, The Cute Syndrome Foundation

A record-breaking event on Hopin leads to a new hybrid approach

Community engagement increased following The Cute Syndrome Foundation’s smaller event series, and more than 200 families attended the next annual gathering. 

This record-breaking attendance was a direct result of the event’s new virtual format, which offered increased access to families who couldn’t attend previous in-person gatherings due to geographical, financial, or time constraints. Previous physical gatherings included live streams but they didn't allow online viewers to engage in a meaningful way. Going virtual helped make the event truly accessible to families joining from around the world. After seeing how the virtual format supported the community, Hillary decided to go hybrid for all future events.

"What's been great with the analytics is that with sponsors and also with my board, I'm able to show them how many people we've had arrive, how much they're interacting, how long they're staying. And then also for our team to be able to use that information to plan events going forward." –Hillary Savoie, Founder, The Cute Syndrome Foundation

More attendees and higher engagement also resulted in additional sponsorship revenue. Using Hopin's attendee engagement metrics, Hillary was able to prove value to event sponsors. In fact, from 2019 to 2020, The Cute Syndrome Foundation tripled its sponsorship revenue, while many other rare disease organizations have struggled to attract sponsors. 

Increased engagement at events has also translated into offline action. The Cute Syndrome Foundation recently drove 50 registrations  for a medical program studying SCN8A in a single morning, just by announcing the program during one of its events on Hopin. It had previously taken two days to reach that number of registrations.

Hopin is now The Cute Syndrome Foundation’s all-in-one events solution. The platform’s functionality will allow Hillary and her team to continue providing more comprehensive support to families no matter where they are in the world.

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"Our experience of doing virtual events [...] has absolutely changed the way that we're thinking about our next event, which will be hybrid. And every event after that, which I think going forward, will have to be hybrid. The fact is that holding our in-person events was not fully serving our community."

Hillary Savoie
Founder, The Cute Syndrome Foundation

Lots of virtual audience buzz

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