Congenital Hyperinsulinism International

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Nonprofit Organizations
North America

CHI steps up social giving presence with turnkey peer-to-peer fundraising solution.


As Congenital Hyperinsulinism International races to raise awareness and funding for treatments for a life-threatening disease many people have never heard about, the nonprofit’s staff adopted an inviting social giving solution that integrates easily with the other Blackbaud solutions CHI already had in place, saving valuable time.

The sooner a baby with hyperinsulinism is diagnosed, the better. While the disease can cause blood sugar levels to drop dangerously low, intervention and treatment can help protect children from related brain damage and even death. But hyperinsulinism only occurs in an estimated 1 in 25,000 to 50,000 births in most countries, and that rarity creates its own set of challenges.

Understanding those challenges on a very personal level, a dynamic group of parents banded together in 2011 to create Congenital Hyperinsulinism International with three main tenets: awareness, support, and research.

Beyond the board of directors and countless volunteers, the small nonprofit is run by a New-Jersey-based staff of three and a half. Their to-do list includes managing a worldwide hyperinsulinism patient registry, organizing two annual conferences, and supporting a cycling team in the Million Dollar Bike Ride put on by the Penn Medicine Orphan Disease Center.

“We never have a minute to spare with our lifesaving agenda, so having the right tools is really important,” Associate Director Jennifer Schmitt said.

A Social Giving Solution with Flexibility and Style

A promising new technology in their toolbox is JustGiving® from Blackbaud®, which has supported CHI’s cycling team in the Million Dollar Bike Ride. CHI was one of the first Blackbaud customers to adopt JustGiving from Blackbaud, and Schmitt said she appreciates its aesthetic appeal.

“I’m not a graphic designer, but I have a background and love for graphic design, and I really liked that side of (JustGiving)—the practical side of setting it up and how we could change our logos, customize, and use our brand. I thought that was really great and better than what similar platforms offered.” She also appreciated the solution’s ability to translate images and setups for different formats, especially mobile phones, “the most important format to get.”

In their first year using JustGiving from Blackbaud, the 12 cyclists on the “Raring to Go for CHI” team collectively raised more than $13,000 for research, which Penn Medicine matched. Cyclists included parents, siblings, health care professionals, and other CHI supporters. Each cyclist could create a personal fundraising page, as could others who took on separate athletic challenges, including a marathon and triathlon.

“Having those families get the word out to loved ones, whether they be friends or family, has become a really important part of sharing our story and raising funds,” Schmitt said.

When the Million Dollar Bike Ride announced it would transform into a virtual event in 2020 due to the COVID-19 crisis, she felt like the organization’s success with JustGiving® from Blackbaud® gave CHI a head start. “This is so easy. It’s turnkey,” she said.

Integration to Help a Small Nonprofit Get Things Done

She also sees the value of the seamless integration with cloud-based solutions CHI previously had in place: Blackbaud eTapestry® for donor management and Blackbaud Merchant Services™ for payment processing.

Adoption of JustGiving was fairly simple and “a huge timesaver” that she knew at the outset “would make my life so much easier” with the consolidation of accounting, reports, and donor lists in one place. “All the donor information went right into my database,” Schmitt said.

She had already come to rely on the efficiencies of Blackbaud eTapestry, which makes it easy to run queries and set up user-defined fields—for example, distinguishing between donors, patients, and healthcare professionals. With Blackbaud eTapestry’s drag-and-drop templates, she can make an email campaign look “really great” on her own without spending too much time on it.

That way, she can move on to the next item on her to-do list as she helps families across the world unite in facing a disease that many never heard about until it impacted them.

“That’s something that’s shared with rare disease organizations, or any small nonprofits,” she said. “Everybody’s wearing a lot of hats and trying to play a lot of roles.”

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