Public Release: 

Global media campaign finds 'hidden' children with rare, fatal aging disorder

CDC Conference presentation: 24 percent more children with progeria discovered

Spectrum

ATLANTA, GA (August 18, 2010) - 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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On-Site Details: The poster will be displayed on Wednesday, August 18, 2010 from 9:30 a.m. to 10:30 a.m., and 3:00 p.m. to 4:00 p.m. at the Omni Hotel in Downtown Atlanta. To set up an interview on-site, please contact:

Megan Lustig
On-site: (301) 467-7869
mlustig@spectrumscience.com

About Spectrum

Spectrum is one of the nation's leading health and science communications agencies. Independently owned and founded by John Seng in 1996, Spectrum is committed to achieving the goals of clients who are involved with issues, products, provider services or research in life and human health sciences. A full-service agency, Spectrum adopts an insight-driven approach in creating strategic frameworks for clients, supported by marketing communications, advocacy relations, public affairs, digital communications and design services. Spectrum provides global reach as the U.S. partner and chair of GLOBALHealthPR an international partnership uniting some of the world's most successful independent health care public relations firms and their affiliates from major markets in Europe, Asia and the Americas.

About GLOBALHealthPR

GLOBALHealthPR, founded in 2001, is represented by leading, health-focused, independent public relations agencies in 12 countries; Argentina, Brazil, France, Germany, India, Italy, Japan, Mexico, Spain, Turkey the UK, and the US. The organization is headquartered in Washington, DC, at Spectrum. The independent nature of GLOBALHealthPR ensures accountability and commitment to clients and staffs.

About The Progeria Research Foundation

The Progeria Research Foundation (PRF) was established in 1999 to find the cause, treatment and cure for Progeria - a rapid aging disease that causes children to die from heart disease or stroke at an average age of 13. In the past 10 years, research conducted in partnership with PRF has identified the gene that causes Progeria and identified a possible treatment for children with Progeria. PRF funded the first-ever clinical trial, and the second clinical trial is currently underway at Children's Hospital Boston. To learn more about Progeria and what you can do to help, please visit www.progeriaresearch.org.

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