Gaucher Community News - National Gaucher Foundation

Jonathan M. Cutler
Shire ets the icure
Submitted by Stephanie Mann
Shire Human Genetic Therapies
It’s often said that a picture is worth a thousand words.
And based on a recent Shire Human Genetic Therapies
(HGT) photo shoot with Gaucher patients, everyone
involved would probably say that it’s worth so much
more.
Shire enlisted the talents of Glenn Katz, a professional
photographer from Dallas, TX, to take all of the
photographs. In addition to his artistic skills and
experience, Glenn brought to the sessions something
many other photographers lack—he himself has
Gaucher disease. “I really enjoyed the opportunity
I was given to photograph people on location. Of
course, this particular photo shoot was even more
special because of the personal connection I had with
everyone. It sincerely was a wonderful experience
meeting all these people and working with Shire,”
said Glenn.
Mathew
Rinaldi
At the end of 2010, Shire reached out to members of the
Gaucher patient community to find people interested
in taking part in one of three scheduled professional
photo sessions in Los Angeles, Miami, or New York City.
“We initiated this project because we want to update
our educational materials and websites with photos
of actual people living with Gaucher disease,” said
Stephanie Mann, Associate Product Manager at Shire
HGT. here was an overwhelming response from people
all across the country: in all, ranging from
to 65 years old.
The primary goal of this project was to create a photo
library of peoplefrom the Gaucher patient community.
It also ended up giving people a chance to share stories
about living with Gaucher disease. “The session
fascinating. I had no idea of all the wo that went
into a photo shoot. Having the opportunity to talk with
a couple whose bright young son has the disease was
particularly touching to me,” said Jonathan M. Cutler
of Massachusetts. Phyllis Aquino from New Jersey said,
“One of the most interesting experiences I’ve had was
participating in the Shire photo shoot. Being able to
share my stories with other patients was very positive
for me.”
The Rinaldi family
According to Brenda Rinaldi from Iowa, whose young
son Mathew has Gaucher disease, everyone involved
sensed a connection and felt special taking part in the
shoot. “Mathew was so excited to be a part of the photo
shoot,” said Brenda. “He felt like a rock star.” There were
many wonderful portraits taken, making this project a
tremendous success.
“The photo shoots reminded me of why I enjoy working
at Shire, and now we have incredible photographs of
incredible people to use in our materials,” said Stephanie.
Shire does photo shoots from time to time in order to
update its educational materials and websites, including
the OnePathSM website.
Participants in this photo shoot were
compensated for their time.
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