Meningitis Advocacy Online

Anything I write will be inadequate.

Imagine getting a call that your college son had died in his apartment alone. He thought he had the flu. Turns out he had contracted meningococcal disease (often referred to as meningitis). Then you find out the disease is preventable. The CDC recommends a meningococcal vaccine for kids ages 11-18 but many parents think of vaccines as something only their young children receive.

I spent a recent weekend with parents (mostly moms), survivors and siblings of meningococcal disease. My role was to teach them how to use social media for their advocacy efforts. Their purpose in gathering was to not only gain valuable advocacy skills but also to move a bit further down the path of healing. Not the physical kind of the healing, the emotional kind, the kind that is a lot less text book.

I don't want to give you the impression their gathering was completely somber. Yes, a good deal of tears were shed but these folks also shared, bonded and supported each other. The kids joked with me about the amazing fact that their mothers now have Facebook accounts. The mothers joked their kids would be astounded at their ability to tag photos.

I felt like I had been provided a very rare seat in their midst. The survivors, siblings and parents find strength through each other. Many of the survivors have lost limbs. As we hung out at the pool Saturday evening, around the pool lay various prosthetics. The parents loved seeing their kids (teens and young adults) hang out having a good time. Being, well, being teens and young adults.

When I work with nonprofits, advocates, volunteers, I am bolstered by their dedication. Working with the parents, survivors and siblings of a preventable disease provided me with a new understanding of a very special kind of dedication. These folks volunteer their time to educate parents, kids and public officials with the intent to save other families from what they experienced.

Social media highlights of the weekend:

• One mom shared how her son created a blog (in Wordpress) journaling her daughter's battle with meningococcal disease. One entry relays the brother and sister playing Guitar Hero (including the keystrokes to disable the drum foot pedal and the innovative solution to attaching the drumsticks to Jamie's hands). The family originally created the blog to keep family and friends updated on Jamie's progress. The result is a public journalling of their challenges and successes.  Their blog is a great advocacy tool for meningitis advocacy efforts. For everyone, not just Jamie's family's efforts.
• During the workshops the moms, survivors and siblings were friending each other on Facebook. It was uplifting to watch them joking and laughing about keeping up with each other on Facebook. Especially considering less than half of the moms had a Facebook account before the workshop.
• After the workshops, one regional group of moms asked for assistance in setting up a Facebook Group to help them coordinate their efforts. When my students come up with their own ideas on how to use social networking tools, I claim success.

The event was sponsored by the National Meningitis Association. The NMA Facebook Page is a super place for you to glimpse the community they have formed.