Virtual challenge for an orphan disease charity beats expectations by nearly 500%

How can a foundation battling a condition that affects just 150 people across the U.S. maximize participation in a memorial 27-mile walk?

Go big, says Laura Rivard, a board member of The APS Type 1 Foundation—specifically, make the event’s route distance total 1,000 miles, combine everyone’s miles, give participants two weeks to log exercise, and make the event virtual. 

The foundation’s February 2023 virtual challenge ended up exceeding expectations for donations, entries, and miles covered. 

But its biggest achievement was fostering community. “It’s very important for our foundation to try to build a sense of community. Spread across the world, people affected by APS Type 1 can feel alone,” says Rivard. “So this race created the opportunity to gather, which is huge.”

APS Type 1 is a rare genetic autoimmune disorder in which cells of the immune system attack certain glands and organs, often starting with the parathyroid and adrenal glands. Symptoms include muscle pain and cramping, weakness, fatigue, and seizures. 

In mid-January, Rivard was participating in a foundation board discussion about how to highlight Rare Disease Day on Feb 28. One board member mentioned a 2022 friends-and-family 27-mile walk in honor of James Read, a young man from the U.K. who passed away from complications of APS Type 1, and noted that the group planned to eventually cover 1,000 miles. 

Rivard had participated in two previous Racery virtual challenges in which teams of participants logged any of ~80 different activities together over the course of a week to cover hundreds of miles on a virtual route. (See two videos about joining a virtual race and logging exercise.)

As the board talked, a light bulb went off, says Rivard. The foundation could sponsor a 1,000 mile walk… a virtual walk. The foundation sought the Read family’s permission to honor James with the event. Rivard created a free test virtual race and invited other board members to enter. They liked the experience. 

“For launching physical events or races, the challenge for rare diseases is that you’ve got no local chapters,” according to Rivard. “Everyone knows someone with breast cancer, so it’s much easier to get a good local turnout at a Susan B. Komen 5k. The beauty of a virtual race platform is that we can connect nationally and internationally, where the pool of people connected to APS Type-1 is much bigger.” 

By the end of January, the group had opened registrations for Walk 1000 Miles for APS Type 1, a virtual race scheduled to start on February 13, 2023 and end on February 28. 

Communicating with potential racers, the foundation wrote that the route starts at “iconic Wrigley Field in Chicago, stops at the steps of the Philadelphia Museum of Art made famous in the movie Rocky, continues to the giant ferris wheel on the Ocean City boardwalk at the Jersey shore, and finishes at the Washington Monument. Washington DC is the location of the 5th International Symposium on APS Type 1 on July 7th and 8th.”  

The board anticipated 50 participants, Rivard says. Despite having just two weeks available for registration–Racery recommends six to eight weeks for a charity event—115 people had entered by the end of the event. 

This race created the opportunity to gather, which is huge.

Though Rivard initially worried participants might not be able to log enough exercise to complete the 1,000 mile virtual route, in the end, participants together covered 4,600 miles. 

Donations also rocked. “$10,000 is far more than we expected, it was a beautiful surprise, a big result for a foundation our size,” says Rivard.  

Participation was boosted by the fact that participants could submit any of ~80 activities for automated conversion into route miles. According to the foundation’s site, “One of the best features of our online race platform is that participants can log any type of activity. You can run, walk, bike, swim, dance, circuit train, or even clean your house as we move our team toward the finish line.”

To prepare for the race, Rivard studied Racery’s best practices for marketing a virtual challenge and concluded that the keys to success were recruiting evangelists and creating registration momentum. 

“The first 40 registrations were hard work, then the ball started rolling. Most of our registration success was word-of-mouth versus publishing on social media,” says Rivard. 

The momentum didn’t stop the day the challenge officially started. Unlike a physical race, people can enter a virtual challenge even after it’s technically begun. “Our event grew 15% in the first week,” says Rivard. 

To shape the race, Rivard drew on her experience as a participant in two previous virtual races sponsored by the women’s athletic clothing brand Oiselle, Womxn Run the Vote and Women Run the Vote. Both events skillfully mixed meaningful routes with mission-linked map pin drops and thematic email updates as teams passed locations on the route. 

Rivard used the race’s announcement email dashboard, accessible only to foundation staff, to send emails to racers roughly every other day. The emails were beautifully written, each with a different tone and theme to keep people engaged: information about the foundation; whimsical notes about the route; medical facts about APS Type 1; and a profile of James Read, the young man this year’s race was dedicated to. Rivard estimates that she spent 8-10 hours creating content and recruiting racers. 

Rivard says the group is already thinking ahead to 2024. Among other considerations, the group might raise entry prices. This year’s low entry fee of $10 helped attract an early influx of college students, but may have left some money on the table for older, more affluent registrants.

[Read about another rare disease charity’s virtual race or create a free test virtual race.]