Building an Online Community for People Living with Paralysis

Claire Sale's picture

I recently connected with Rob Gerth, the Director of Digital Media at the Christopher & Dana Reeve Foundation. After learning that the Foundation was using Blackbaud Social to power their community, I became interested in learning more about the Foundation’s efforts as well as the techniques and technology behind its growing online presence. Below, I ask Rob a few questions about their efforts and successes, and share what's upcoming for the team.


Q. How did the Reeve Foundation Paralysis Community get started?

We decided to create a community for people living with paralysis using our internal Information Specialists (IS) as the go-to experts. Our ISs are trained to answer questions from people living with paralysis, their families and professions about paralysis and spinal cord injury.

The community has been on two other platforms previously, both of which were basically 1990s forums. Neither was meeting the needs of the community members. Neither was tied into the social media, nor did they have an interface that felt like it was from this century.

Lastly, our social media, including Facebook and Twitter, had taken off and we wanted our community to be blended into that.

Q. Are there any community success stories you'd like to share?

We are helping people everyday by answering questions and connecting people with services. And now we have grown to the point where community members are starting to help each other. For instance, a homecare nurse posted asking why she had trouble with every client when she attempted a certain technique. The community lit up with responses telling her exactly what her clients were apprehensive about.

From the Foundation’s perspective, the community allows us to drive traffic to our main website. The community creates fresh content everyday, which people want to come and see. Our Daily Dose blog, which covers news for people living with paralysis, gives us content to post on other social media and drives traffic back to our site.

Q. What advice do you have for other organizations thinking about creating a bespoke online community for their audience?

It’s a lot of work, so make sure an online community will fulfill the needs of your constituents. Going into it, you need to know why you are creating a community space.

Once it is running, your community becomes a great source of content. Be sure to take that content and use it on your other social media outlets to drive traffic back to your site.

Q. I understand you're using Blackbaud Social to power your community. Do you have any features or functionality you particularly like or work well for your purpose?

Our Groups are growing. Groups is a feature that allows community members to create a space around an interest. They get to decide what topic is important to them. They get to decide how private or public it is, they get to run it. Members can post on a group blog, post photos, documents, and communicate with each other. 

Our members surprise us with what they come up with. Needs we would not necessarily had thought of. While we are thinking about the serious topics of caregiver support and creating an equipment exchange, the community created a Gamers group to discuss online games, controllers and accessible accessories.  

Q. What's next for the Community?

The forum is being upgraded and will be even more integrated with our social media. Even before that we will be holding some contests: One will ask people to come up with the best way to promote the community, and another for a “Send us Your Travel Adventure Photos Contest” which will focus on letting people show the types of travel possible in your wheelchair. Keep an eye on the site to get involved as these haven't been launched yet!


Thanks to Rob Gerth for taking the time to share his wisdom with us. You can learn more about the community by looking around the Reeve Foundation Paralysis Community site.