The Tuberous Sclerosis Alliance (TS Alliance) had an active online forum for members, managed by a dedicated cadre of volunteers. The day-to-day management of the online group became extremely time-consuming, and TS Alliance officials realized quickly they needed a newer and more dynamic platform to satisfy the needs of the members and to generate useful data.
The Silver Spring, MD-based TS Alliance, founded in 1974, is dedicated to finding a cure for tuberous sclerosis complex (TSC), while improving the lives of those affected, by developing programs, support services and resource information, stimulating and sponsoring research, and creating and implementing public and professional programs designed to increase awareness of the disease. TSC is a devastating and rare genetic disorder that causes tumors to form in vital organs, primarily the brain, eyes, heart, kidneys, skin and lungs. Currently there is no cure.
To the TS Alliance, the online forum was a core piece of the support system for its members, and it was time for the system to evolve.
"Our online support community has always been an important benefit for our constituents," said Kari Luther Rosbeck, TS Alliance President and CEO. "However, our prior system was somewhat antiquated and difficult to search, while impending burnout among our volunteers who managed the online groups was becoming an issue. We realized we needed a change, and Inspire offered a unique solution."
The TS Alliance partnered with Inspire to transition the forum to the Inspire platform, creating the Tuberous Sclerosis Alliance Support Community.
The organization had some unique issues to address during their transition process. Because TSC can cause cognitive impairments, the TS Alliance asked Inspire to do whatever possible to ensure that constituents understood how to navigate the new platform. In response, Inspire created instructional videos and documents for the TS Alliance to share and spent extra time training TSA volunteers how to manage the online community. In addition, Inspire worked with the TS Alliance on a communications plan and transition process so that all of its constituents were aware and comfortable as they moved to the new platform.
"It's an example of how we are very sensitive to the core issues of members of patient communities," said Inspire CEO Brian Loew. "We learned very quickly that Alliance leaders placed high importance on having this transition not confuse or upset its members, particularly those with TSC, and we made their concerns our top priority."
With the day-to-day help desk issues and macro community moderation assumed by Inspire moderators, TS Alliance leaders could focus on connecting with the online community more fully. The TS Alliance can analyze topics that members discuss most frequently, bringing the organization closer to those issues that members find important and develop informational materials that address those issues. The volunteers could get back to why they originally wanted to be involved with the group: to provide support and insight to individuals and families dealing with TSC.
"While there were bumps along the way, the transition to Inspire was made easier because everyone on the Inspire team worked hard to address our concerns from the very beginning," Rosbeck said. "And the new platform has been overwhelmingly accepted by the vast majority of our community."
With more than 80 partnerships with leading national patient advocacy organizations, Inspire (www.inspire.com) creates and manages secure online communities, organized by medical condition. Inspire communities are moderated, secure, and free to nonprofits. Inspire communities give nonprofits a turnkey social media platform for messaging, fundraising and more. Contact Danielle Leach, Inspire's Director of Partnerships, at firstname.lastname@example.org, to learn how your association can benefit from this free service.