close Offers Private Group Support on Facebook

June 28, 2017

By: Stephanie Lollino

This month, we want to spotlight the remarkable success of our new private Facebook support group called, You Are Not Alone – Dealing with Spinal Cord Injury.

“The group has more than 1,000 members in just 12 weeks,” Says Stephanie Lollino, Executive Producer of “In terms of support, that’s huge – because simply getting four or five people with spinal cord injuries together in a room to talk about how they cope is a difficult feat. Creating this curated space – a professional extension of our website – makes members feel safe and more likely to discuss tough issues.”

“It felt like we had so many people following us on social media that it seemed like the perfect time to let people close to us get to know each other,” says Lollino, the creator and administrator for the closed group. “In January of this year, I took a small idea of support and select membership, and turned it into a place where those that normally would not have access to one another, could safely discuss the day-to-day issues of living with paralysis.”

Facebook offers different types of groups, and this one is classified as closed. That means an administrator must approve pending members and that posted content can only be seen by members. “None of your friends or family can see what you post unless they’re in the group as well. That feature is great for those who want to discuss subjects deemed, TMI or just plain old embarrassing. In our group – we do tastefully discuss such things.”

People are writing in about all sorts of complex issues – as well as things you may not expect. “We have had lengthy questions about mattresses – the string for each of them has spanned over three weeks and had nearly 100 comments.” Other posts deal with bowel and bladder problems of all sorts, new innovations in wheelchairs and transportation and how to cope with loneliness.”

There are few rules for members. “If you’re just here to talk about SCI, the rules are easy,” Lollino says. “But if someone tries to sell something or even hints at pestering another member – I find out about it pretty quickly and take care of it myself.”

Guidelines include:

  • This group is here to help others get through everyday day issues with spinal cord injury (SCI). We are open to any topic, as long as it remains respectful and relevant.
  • If you are going to comment, we would prefer it if you could try and add valuable solutions to the conversation. Be friendly, be fair and use common sense.
  • Medical Advice: Please consult your physician, therapist or clinician before taking advice from any member of this group.
  • Above all – please remember that spinal cord injury has changed the lives of those in this group forever – kindness counts.

“Social media grows more important everyday, so it makes sense to facilitate a conversation zone, where people living with spinal cord injury can share life experiences. For, Facebook has been that place.”

If you know someone that would like to join – here is the link:

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