If you have questions or want advice about intimate subjects related to spinal cord injury, it can be hard to ask questions in a public forum. To help provide a safe online community for discussion related to all aspects living with paralysis, The opens in a new windowChristopher and Dana Reeve Foundation recently launched a redesigned forum called opens in a new windowReeve Connect.
“We noticed that when we were posting about more intimate subject matters, whether that be sexual function, relationships or even just information on being newly injured, we would get hundreds of likes, but we would never have the conversations that we had on travel, on things that are less sensitive or less personal,” says Rebecca Laming, the vice president of marketing and communications at the Reeve Foundation.
Discussions with members revealed that people often weren’t comfortable sharing intimate information on social media platforms, where others could see your face and know your name. Reeve Connect was created so that members could share only what information they felt comfortable sharing. “Our idea was to make a kind of home base and interactive safe space for individuals living with paralysis as well as their caregivers and family members to come together and have real conversations on the intimate realities and long term challenges of living with paralysis,” says Laming.
The closest analog to Reeve Connect is the opens in a new window CareCure Community Forum hosted by Rutgers University. The CareCure Forum is the largest and most active SCI community in the world, but its website is a throwback to earlier version of the web. Reeve Connect is a modern platform, easy to browse, search and post multimedia content.
To help with the heavy lifting of building a thriving online community, the Reeve Foundation has enlisted 16 moderators to oversee the different topic categories on the forum, including the Wives and Girlfriends of SCI support group, and other well-known and active members of the online SCI community, including Zack Collie, Garrison Redd and Ally Grizzard, to name a few. In addition, the Reeve Foundation has medical experts to share knowledge and resources with members. “Our goal is to turn this into the preeminent, one stop shop for conversations and community around paralysis,” says Laming.
The Reeve Connect community was made possible by a partnership with Administration for Community Living. You can browse the forum as a guest, but will need to register to be able to ask questions or join discussions.
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