Have you ever Googled someone from your past just to see what they’ve been up to?
Have you ever found something startling? Tragic? Fascinating or completely unexpected?
A decade and a half ago, before Twitter, Facebook, YouTube and smartphones made social media a mainstream staple, I found my first online island of fellow geeks. It was an IRC-based Star Trek roleplay group that had a profound impact on me. It was my first real interaction with others like me and my first chance to see what older teens and adults with my interests and ambitions were like.
As a middle-schooler, older members and the group leadership were role models that I looked up to. I rarely interacted with them, but when they spoke in group chat I payed attention. When they did notice me it was exciting. When they mentioned things I wasn’t familiar with, I researched them. These people probably have little clue what impact they had on me, but it’s a reminder of how all our words and actions both online and off can affect people more than we know.
At the top of the hierarchy was Matthew Might, founder and Cool College Guy. Over the years I would talk to and even briefly meet his little brother, but Matt himself remained a distant figure of authority and general awesomeness.
Fast forward to a few years ago. I now had new reasons to stand in awe and look up to this man.
A casual decision to look up a few people I once knew on a search engine lead me to an article Might wrote entitled “Hunting Down My Son’s Killer”. Whoa. Not what I was expecting at all.
It turns out his son, Bertrand, is still alive. Bertrand, you see, is now the first person ever officially found to have a rare and serious genetic disorder (N-glycanase deficiency). Rare, but thanks in large part to Might’s harnessing of the Internet’s potential, not the only one known to be facing this type of situation.
From time to time I check in on the blog chronicling Bertrand’s progress (Overcoming Movement Disorder). According to his family, Bertrand is able to do more and more as time goes on and is a happy child despite his medical issues.
What spurred me to write this, however, was a new article by Seth Mnookin in the New Yorker that chronicles just how critical and effective Might’s online efforts were in moving towards a diagnosis and help for his son.
One of the major issues facing identification and treatment development for new medical conditions is the difficulty in locating other potential cases. As Mnookin wrote, “until other patients with the same condition were found, there was a chance, however remote, that Bertrand’s disorder was caused by something else. Moreover, without additional cases, there was virtually no possibility of getting a pharmaceutical company to investigate the disorder, no chance of drug trials, no way even to persuade the F.D.A. to allow Bertrand to try off-label drugs that might be beneficial.”
Many researchers and medical institutions keep such a tight hold on patient information that, despite vast improvements in communications and database technology, searching for similar cases can be extremely difficult even for medical professionals. Unfortunately, a lot of this seems to be less about protecting the patients and more about guarding potential discoveries from competitors.
Might was no stranger to the workings of the internet. He put together carefully crafted articles and pages that not only told a memorable story but also used search engine optimization targeted at both medical professionals and average people searching for answers in cases that might be similar to Bertrand’s.
In a very short time his campaign brought together numerous individuals with similar symptoms, many of whom had searched for years for answers. More information is being made available and more researchers are beginning collaborations targeted at helping those living with N-glycanase deficiency. NGLY1.org now lists 16 confirmed cases since the first diagnosis in 2012.
Matt works to raise funds for research and promote awareness not only of Bertrand’s disorder but also of the power patients and guardians have to reach beyond the system to find each other and use their collective energy to push for advancements.
“Cool College Guy” continues to awe and inspire me with his ability to bring people together.
You can find out more about Matt, Bertrand and the journey of the whole Might family by checking out these links:
Overcoming Movement Disorder (their official blog)
“Hunting My Son’s Killer” by Matt Might
“One of a Kind: What do you do if your child has a condition that is new to science?” by Seth Mnookin from The New Yorker