Matthew Might and the Fight for Bertrand

Image from The Illustrated Guide to a Ph.D. by Matt Might [Matt has licensed the guide for sharing with special terms under the Creative Commons license.]

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

www.ngly1.org

Done with San Japan 7! Whew!

My sister as Elsa from Frozen, taken in the audience while we waited for the cosplay show to start

Friends and family came in from Oklahoma and we had a nice long weekend attending the San Japan convention. We didn’t do as many things at the con this year since we also explored downtown a little but we still had a great time. I’ll have a few pictures up later on but since I was entertaining out-of-towners I didn’t get quite as many as I would have liked.

Time to rest up for Wizard World San Antonio in just a few short weeks!

What Bothers Me About the New “Lady” Thor

“This is not She-Thor. This is not Lady Thor. This is not Thorita. This is THOR. This is the THOR of the Marvel Universe. But it’s unlike any Thor we’ve ever seen before.” ~ James Aaron, series writer

Marvel had been spreading the word about “big news” that would be announced on The View.

The media had a great time speculating and poking fun at this unconventional pairing. I even saw jokes about Weird Al (whose new album was to be released the same day) joining the Marvel Universe. Why not? We’ve already entered the Twilight Zone.

The big news came:

The next Thor would be a woman.

Then talk immediately turned to breasts.

Because, you know, female superhero.

TIME did an interview with some of the Marvel team, including series writer Jason Aaron. Aaron highlighted that this was “the natural progression of the story I was telling and that’s been building in Thor history for decades now.”

There have been several “Thors” in the past. Thor is not necessarily Thor Odinson, but rather any person (or even frog, it turns out) imbued with the Power of Thor. It stands to reason that eventually a woman could and would wield the hammer.

I love that they are exploring the possibility that Thor can be a woman. I’m excited to see who it will be.

Here’s my problem.

Aaron has done his best at every turn to downplay the “shock value” of the gender switch and instead focus on how it brings depth to the ongoing saga. In the TIME article mentioned earlier, he notes that in his writing for the series, “it doesn’t matter the race or gender or where those people are from. It’s all about figuring out that character and telling your story.” He insists “the story didn’t come about because of any sort of mandate.”

Marvel, however, has glaringly and unapologetically paraded the next Thor as a novelty while claiming that they’re doing no such thing.

After all, they never called her “Lady Thor”.

If you wanted to prioritize that a woman as Thor is “natural”, why hype it so heavily and announce it in such an unnatural way via a program not generally associated with your topic other than its focus on discussing women and gender roles?

If you’re not pandering to women, why go out of your way to debut the news on a show whose genre averages 73% female viewership?

What bothers me about Thor isn’t that she will be a woman. What bothers me is that Marvel took what could have very well been an excellent “natural progression” (that Thor would just happen to be female for a time) and, by presenting it in this light, took the “natural” away in the name of “reaching out” to women.

In that same group interview, Axel Alonso, Marvel’s Editor-in-Chief, stated “We see fans of all shapes and sizes and genders in comic stores and at conventions. And we perceived there to be a real thirst for characters that reflect what we see in the mirror. From Miles Morales, the African-American Spider-Man, to the new female Thor, our goal is to make our characters reflect the outside world.”

If you want to really want to reflect the outside world, Marvel, you can start by closing the gaping hole front and center in her armor. Unless, of course, she absolutely needs it as a vent for all her sexiness.

Because, you know, female superhero.

New “Princesses and Villains” line from Black Milk Clothing

Black Milk Clothing has released preview images of its upcoming “Princesses and Villains” line on their Pinterest page. Available on July 29, the collection is full of Disney goodness and includes swimsuits, dresses, leggings and lots of mix-and-match basics for creating your own everyday princess-y look. I particularly love the “painting the roses red” skirt and the mermaid leggings!

5 Tips for Attending San Japan

Twin sisters @ San Japan Mach 5 in 2012: “Mokona is Mokona. If you were to count them you would count them one Mokona, two Mokona, and then you would stop because there are only two.” ~ Yūko, ×××Holic

Here are 5 quick tips gleaned from my past experiences with the annual San Japan convention here in San Antonio. Hopefully they will make your future experiences a little better!

1. Be prepared for both scorching heat and freezing air conditioning. Texans are used to crazy hot summers, and Texas air conditioners are made to fight them! Variable layers are good, especially for small children and others who get cold easily. I’ve seen plenty of people uncomfortable at past San Japans because they were too cold in event spaces.

2. Need a quiet space for a little while? Check out the Hyatt event floors near the big rooms. The big open space just outside the doors is generally in one of two states: either noisy and filled with huge crowds/lines waiting for something or almost empty and (relatively) calm. You might just get lucky and catch a downtime.

3. Give yourself plenty of extra time if you’re eating at a nearby restaurant. Even though downtown San Antonio is used to tourist and event crowds, restaurants can still easily fall behind and take much longer than normal to get you through a meal. Don’t assume you’ll be able to eat in a normal time frame and be back quickly for the next panel you wanted to catch.

4. Take a breather at the HemisFair Park right behind the convention center and hotel. Not only is this a beautiful area to escape the crowds for a little bit, it’s also a popular place for cosplay photo shoots. Fountains and playgrounds and plazas, oh my!

5. Check out the free San Japan mobile guidebook. I used this throughout the convention last year and found it really useful. Not only was it great for keeping track of the schedule, it also let me quickly reference special guest bios and more without having to pull out my physical con book. It worked well and I’m glad it’s back for SJ7.

Do you have any tips for attending San Japan? I’d love to hear them!

Subtly Geek Chic: Simple Beaded Bracelets with Sonic Screwdriver Patterns

Check out these bracelets by EmmasHandmadeDesigns on Etsy. See what makes them so special? If so, you’re almost certainly a Doctor Who fan.

I love clothing and accessories that are “subtly geek chic” like this. While the minimalist color patterns of the sonic screwdrivers are recognizable for fellow Whovians, the bracelets themselves aren’t overtly branded. This gives them a lot more flexibility for use in more professional or dressy situations when you don’t want the focus to be on your fandom but still want to add a bit of fun and personality to your outfit.

Do you have any “Subtly Geek Chic” items?

Via Technabob

“Get Pop-Cultured” with Barnes & Noble: Tons of Free, Fun Events 7/18-8/10

Love pop culture? Love free fun? Of course you do!

Barnes & Noble will be hosting almost a full month of events from 7/18-8/10 in its upcoming Get Pop-Cultured series. Special guests, giveaways, trivia nights, crafts and even a Frozen sing-along are on the schedule along with a lot more!

There are so many events at the nearby stores I’m probably not going to be able to attend everything I would like to! I know I’ll be trying to hit a Batman Day celebration, a special cafe tasting, a lego event, a cosplay showing and even a DC Comics Carnival. They haven’t even announced what some of their events will be, like Marvel Day on 8/2 and a “Page & Screen Weekend” whose image promises Doctor Who goodness along with other surprises they have planned!

With San Japan (July 18-20) and Wizard World San Antonio (August 1-3) we already have a busy month ahead of us here in San Antonio. Fortunately quite a few of these events (like Batman Day!) are during the week, so even if your weekends are fully booked with the bigger events you can enjoy some of this free fandom goodness.

For a full list of events near you (they can vary from store to store) check out the Get Pop-Cultured site. They’re still adding events, so be sure to check back later on to see what’s going on!