Rick's stories about conferences are always full of him being chased by kids, on foot or in wheelchairs, and this is actually what happens a lot of the time. Celebrating the playful side to children is part of Positive Exposure's mission: to let kids be kids, outside of the context of any medical factors. Eating dinner with Mikie and his family I witnessed his expressiveness, along with his formidable pout when things didn't go his way. His mom, Selina, told me about how he charms cashiers when they go to the store, showing his dexterity in getting his way. Mikie is fortunate in that his family appreciates his individuality. His grandmother, Debbie, said that his deafness was not an issue for them so much as that he found a place in the world where he fits.

An example of someone who is trying to make the world fit her rather than the other way around, Martha was everywhere and everything over the weekend. She was hostess, lecturer, listener, affected person, and mom of an affected child. Her signature laugh piped up at all times, a signal that her candor would not be far behind. We were fortunate to have convinced her to do a video interview to help inform the project planning for our Positive Ties database, as the perspective of someone like Martha is exactly what healthcare professionals in training need to hear.  

Martha speaks openly about her own experiences growing up with Noonan Syndrome because she believes that avoiding pain does not make it go away.  When parents try to avoid talking about the social pressures that their kids with Noonan Syndrome confront, they simply isolate their child. "Everything affects us," is her message, as a parent and an adult with a genetic condition.  Through honest communication she wants to make her son's life different than her own. Listening to the things that she has survived and appreciating how this has marked her, I hear Martha's words,—I also hear the dignity that comes from refusing to be defined by others. "I don't know how I did it," she says about raising two fine boys while surmounting her own health difficulties. But she did it. Perhaps it is difficult to see our own style because it is everything we are.

Amidst the serious work of a conference, there is always serious play. That's why a fashion photographer is not out of place on the speaker list alongside doctors and scientists. Positive Exposure highlights the signature manner in which people who happen to have Noonan Syndrome move, laugh, live.  And maybe shows them something they don't mention in the medical articles---that they have style.