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Portrait of a man with morquio syndrome

The theme for Rare Disease Day a few days ago (feb 29) was: Join us in making the voice of rare diseases heard.

In honor of that I wanted to post a few images from a project I started years ago.  The story is of my friend Nick, and inspiring man with Morquio Syndrome who I first met while taking pictures for a pharmaceutical company.  Every year I return to the small town in rural Louisiana to spend the day with his family.  This year I’ve pulled the first few years of images together on my site.

The full story will be a decade in the making.  <the gallery>

 

Portrait of a man with morquio syndrome Man with Morquio Syndrome takes a selfie with his daughterMan with Morquio bikes with his son

 

 

Photograph of a young boy on a bicycle

We had a great opportunity to work with the folks from GA Communications on a project for BioMarin this past fall photographing a series of patients.  We spent three days on location around the Bay Area making images that had to have a strong sense of flared backlight.  While we couldn’t shoot all of the images late in the day, we made use of both ideally placed sunlight and a strobe set far off in the distance.  For the swing shot I made a swing from an old piece of redwood and some nice looking hemp rope.  Using high rollers for a large silk above, we slid medium rollers underneath with a speed rail tube across so that we could place the swing wherever we wanted.  I knew we weren’t going to find a perfectly placed low hung tree branch : >

Yes, I got into the pool.  I had to.  With the tether cord held by an assistant and connected to a computer on dry land, I shot with a long lens handheld.  Most of the project was photographed using Canon’s new 5dsr 50 megapixel camera and a ProPhoto B1 in the trees.  And, lots of large silks.

 

Photograph of a young boy on a bicycleTwo boys for a pharmaceutical adHealthcare photograph by San Francisco Advertising photographer Robert Houser for a California based pharmaceutical company