Disease Awareness

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I learned several weeks ago that I’m to receive the Genetic Alliance “Art of Reporting” Award in June for Spectrum’s work on behalf of The Progeria Research Foundation‘s (PRF) “Find the Other 150” campaign. I want to publicly thank Genetic Alliance for recognizing this campaign and our commitment to such a rare disease.

Progeria is a rare, rapid aging disease in children and our client, PRF, is working to find a treatment and cure for this disease. As of October 2009, experts estimated that there were approximately 150 unidentified children with Progeria around the world. Spectrum and our global partners, GLOBALHealthPR, teamed up with PRF to launch a global communications effort to find these 150 children.

I am accepting this award on behalf of our team at Spectrum and our GLOBALHealthPR partners who bring their local market expertise to this global outreach effort. Our partners have been so instrumental in the success of this campaign, continually assisting with media outreach and support to find new and creative channels to spread PRF’s message.

This campaign is a great example of the power of strategic global communications. When we started the “Find the Other 150” campaign more than a year ago, the medical director of PRF said that if we found even one child, the campaign would be considered a success. Today, our efforts have led to the discovery of 17 children with Progeria from 12 countries around the world. Each child identified brings PRF one step closer to finding effective treatments and a cure. In addition, each child benefits from PRF’s unique medical care and is connected with trained medical professionals as well as other families of children with Progeria. PRF’s drive and determination is awe-inspiring and continues to be a daily motivation for our team.

As honored as I am to receive this award, I am just as honored to have the privilege to work with PRF, as well as serve on the organization’s board of directors. Our Spectrum team and GLOBALHealthPR partners are passionate about working with PRF to pursue the “Find the Other 150” mission of identifying children around the world with Progeria. We hope to continue to exceed their expectations in finding other children as the campaign continues.

I’ll report back on the Awards Ceremony in June. Thank you again, Genetic Alliance!

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Megan Lustig - site
Megan has Progeria. GLOBALHealthPR is leading the worldwide search for 150 other children with Progeria.

A global quest for “missing children” begins in earnest today.

Only 54 children with Progeria, a rare disease that causes premature aging in children, are known to researchers and patient advocates. However, experts estimate that another 150 unidentified children with Progeria live throughout the world.

GLOBALHealthPR partners have pooled our resources in an international campaign to promote awareness and dialog to help locate these children. Each child who is brought forth could benefit from the medical services and unique care that The Progeria Research Foundation (PRF), our pro bono client, can provide.

“Our goal is to find these children as quickly as possible so we can educate their families and health-care providers on the latest in Progeria research and treatments. We are excited to launch this campaign with GlobalHealthPR because their global reach will help us spread awareness to a worldwide audience,” said Audrey Gordon, President and Executive Director of PRF.

Progeria is personal for Gordon and her sister, who is PRF Medical Director Dr. Leslie Gordon. Dr. Gordon’s son was diagnosed with Progeria more than 10 years ago and the family is dedicated to finding a treatment and cure.

If you have contacts or friends overseas, or if someone you know or treat has Progeria-like characteristics, please contact The Progeria Research Foundation at www.findtheother150.org for resources that will help to provide them the best treatment possible.