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Global Media Campaign Finds ‘Hidden’ Children With Rare, Fatal Aging Disorder

August 18, 2010

CDC Conference presentation: 24 percent more children with progeria discovered

Spectrum, a health and science communications firm, announced the results of a global awareness campaign that “found” 24 percent more children identified with a rare, fatal, and rapid aging disease called Progeria. The findings are being shared at a Centers for Disease Control national conference on health communications.

As of October 2009, only 54 children living in 30 countries had been identified with Progeria, a disease affecting less than .01% of the world’s population. However, experts estimated that another 150 children with Progeria were alive elsewhere in the world, but had not yet been located or identified.

“At the launch of the campaign, we thought that finding even one child would make the campaign a success,” said Audrey Gordon, Executive Director and President of The Progeria Research Foundation (PRF). “Each additional child we identify with Progeria allows us to provide him or her with unique and essential medical services and care, and significantly furthers medical research to develop treatments and a cure.”

“These results have exceeded our greatest expectations,” Ms. Gordon said. PRF is the only non-profit organization solely dedicated to finding treatments and the cure for Progeria.

Since all children with Progeria eventually die from the same heart disease that affects millions of older people, finding a cure for Progeria may provide clues to preventing or treating heart disease, as well as other conditions associated with the natural aging process.

In creating and carrying out the “Find the Other 150″ campaign for PRF, Spectrum collaborated with partner firms in 10 countries through GLOBALHealthPR, the largest independent public relations group dedicated to health communications worldwide. Reaching out to media and medical professionals with culturally relevant and strategic communications methods, as well as using online tools such as the campaign website (www.findtheother150.org), the awareness generated more than 20 inquiries to PRF about potential children with Progeria in six months. From these inquiries, 13 new children with Progeria were identified from seven countries, increasing the total number of children known to have Progeria worldwide to 67 (a 24 percent increase).

The “Find the Other 150″ campaign and results are discussed in a poster presentation at the 2010 Centers for Disease Control and Prevention (CDC) fourth annual National Conference on Health Communication, Marketing and Media (August 17-19).

“Stretching across language and geographic barriers, the campaign’s results to date testify to the power of global collaboration with culturally-knowledgeable local communicators,” said John Seng, President and Founder of Spectrum, and Chairman of GLOBALHealthPR. “If disease awareness efforts can make such a big difference in the world of Progeria, just imagine the enormous impact that well-funded education and outreach campaigns could have on more common diseases, and the implications for enhancing research, treatment and prevention,” he said.

The 2010 CDC National Conference on Health Communication, Marketing and Media will bring together individuals representing academia, public health researchers and practitioners from federal and state governments and the private sector, and will provide a forum for collegial dialogue within and across these disciplines.

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