10) How you, yes, I mean YOU, helped to inspire this research- the story behind the discovery

I wrote this essay to be read over my community's public radio station.  It tells a very succinct story of how social media was a huge part of making this oxytocin experiment possible!

"As a late adopter of social media, I always thought of Facebook and other such sites as places for friends, both actual and virtual, to post photos of their latest vacations or to share commentary on a current event. I never really understood the value of having a virtual community since I felt that I already had a meaningful social network amongst my real friends.  All of that changed in 2011 when my then 8-year-old son was diagnosed with a rare brain tumor called craniopharyngioma.

My son had a 14-hour long brain surgery to remove the tumor and a 6-week recovery in the hospital following the surgery. The surgery saved his life but he was left to deal with the aftermath of complex medical conditions for the rest of his life.

Despite my previous lack of involvement with social media, I ended up joining an online support group and several Facebook groups for his rare condition. Besides receiving emotional support, I have also learned a tremendous amount that I would have never learned anywhere else.  At first I was nervous in reading the medical advice from the other members and I thought, shouldn’t they be getting advice from their doctors?  Is this safe?  Then I soon realized that the members’ experiences were valuable in a way that a doctor’s advice could never be- after all, there’s nobody more invested than someone who has skin in the game.

The longer I witnessed the effects of this brain tumor, the more I realized how many problems were NOT being treated and that this was due to inadequate research.  When I surveyed others in the support groups, I learned that my son was not the only one suffering from these untreated symptoms. Desperate to help him, I decided to do something about it. Between my own reading of the existing literature and networking with other survivors, caregivers and researchers, I have acted as a communication bridge between patients and scientists.  In my correspondence with interested researchers, I have shared our observations from the trenches.  My ongoing conversations are proving fruitful and I am hopeful that my reports may shape what may take place in the lab, and someday, in the clinic.

In these last 4 ½ years, I can’t help but notice the powerful collective wisdom of ordinary people who suffer from a far-from-ordinary brain tumor. Bridging the information between the survivors and researchers, I feel like a matchmaker who has introduced two amazing people to one another. As a witness of this marriage, now I can’t wait until they have kids! Call it Grassroots Medicine or Crowdsourcing for a cure, I am now a great fan of social media. Thanks, Facebook friends- you guys rock!"

And now my "matchmaking" efforts are paying off with the discovery of oxytocin's benefit for my dear son- and I hope others may also reap these benefits!