WASHINGTON, DC: Elated by the discovery of the gene that causes Progeria, a disease that causes accelerated aging in children, the Progeria Research Foundation called upon Spectrum Science PR to help spread the news.
The agency organized a press conference at which Dr. Francis Collins, director of the National Human Genome Research Institute and senior author of the report that revealed the findings, and John Tacket, a 15-year-old with Progeria, both spoke. Spectrum also handled local publicity for a Progeria fundraiser event held in Boston last week. Celebrities Ted Danson and Mary Steenburgen hosted the gala.
The founders of the Progeria Research Foundation, Dr. Scott Berns and Dr. Leslie Gordon (and their son Sam, who has the disease), became the faces of Spectrum's media outreach.
"Our biggest challenge was getting the word out about the discovery, without exploiting Sam," explained Susan Newberry, SVP at Spectrum.
A media strategy was developed based on what the child's parents were comfortable with. Spectrum's team asked Dr. Berns and Dr. Gordon a series of questions about what tactics were acceptable to them.
So far, Sam and his parents have granted interviews to People magazine and NBC's Today show.
Children with Progeria die from complications of cardiovascular or arteriosclerosis at an average age of 13.