Man with rare disease to have photography featured in traveling show

MOUNT VERNON - Andrew Hoffman, of Mount Vernon, will have his iPhone photography featured in a traveling art exhibit, 'Dream, Achieve, Inspire,” debuting this summer at the Cystinosis Research Network's family conference.

When he was 10 months old, Hoffman was diagnosed with cystinosis, a rare disease that causes a buildup of an amino acid in various organs, muscles and white blood cells.

Christy Greeley, executive director of the Cystinosis Research Network, said only about 2,000 people in the world have cystinosis, but it is commonly undiagnosed or misdiagnosed. In the United States, Greeley said there are fewer than 500 diagnosed cases.

'Even though it's really small, it's really tight-knit,” Hoffman said about the cystinosis community.

Now 27, Hoffman will soon be a chef at Quarter Barrel, a bar and arcade opening later this summer in Cedar Rapids. He said he works 60 hour weeks and is actively involved in the Cystinosis Research Network.

'There hasn't been anything I haven't been able to do because of it,” Hoffman said about cystinosis. 'If anything, I feel like it's made me a stronger person.”

Hoffman said his involvement in the Cystinosis Research Network stems from knowing that being able to ask others questions helped his family.

'We bring together not only the families and patients with cystinosis but also professionals,” Greeley said about the conference.

Hoffman, who compared the conference to a family reunion, said he sometimes sits on panels to answer questions and encourages others to be their own advocates.

'You really lean on the people that have gone through the experiences you've been through,” Hoffman said.

The new art exhibit will open July 16 in Chicago and will visit Brazil, Mexico, Spain and the United Kingdom, Greeley said.

Greeley said the art show is a way to showcase people with cystinosis without focusing on how sick they are and spread awareness of the disease.

Hoffman said he was looking forward to having the conference become about more than medical discussions.

Some of the photography Hoffman submitted included a picture of a mushroom juxtaposed next to a picture of Grand Teton. He said he wishes he would have done something more related to his culinary interest.

Others submitted sculptures, paintings, videos, poetry and a range of other projects, Greeley said. She added there are more than 100 pieces as part of the exhibit from more than 30 different countries.

Hoffman said some of the pieces in the show would not have much in common except for their creators having cystinosis.

'It brings a broader meaning to why those are together,” Hoffman said.