Robert, in the black shirt, pictured with the Weiss brothers – Michael, Emil, the current president of the APBD Research Foundation, and Gregory, the founder and past president. 

Current Age: 63

Onset of Symptoms: 48

Age at Diagnosis: 55

“Nine years ago, in 2010, after seven years of extensive testing, I was diagnosed with a rare genetic condition called APBD. The official results came from a doctor at UCLA. I learned that I was one of only about 50 known cases around the world.

As a photographer and storyteller, I understand the impact of a moment. I have photographed many of the finest actors in Hollywood and taken pictures on the set of major motion pictures. I pride myself on conveying the essence of the person and being able to see opportunities that no one else sees. As my mobility became more limited, many assumed my photography would suffer. However, I have found the opposite to be true. I am now viewing the world from an entirely different vantage point. This has helped me to create photography exhibits that showcase the richness of everyday life.

For me, I choose to focus on the possible.”


Robert’s story is part of the APBD Research Foundation’s, #MyAPBDstory campaign, to raise awareness and funds on Rare Disease Day, February 28, 2019.
Please visit this webpage to learn more and click here to donate.