The search begins
Posted on 27. Oct, 2009 by Handbaglady in Communications, Health
Hayley from Bexhill-on-Sea has Progeria. She is one of only two children in the UK with this rare disease. Hayley has won a prestigious Children of Courage award and has appeared in a number of documentaries about the disease. She’s a very brave little girl.
GLOBALHealthPR is leading the worldwide search for 150 other children with Progeria.
Only 54 children with Progeria, a rare disease that causes premature aging in children, are known to researchers and patient support groups. However, experts estimate that another 150 unidentified children with Progeria live throughout the world.
Aurora and our GLOBAHealthPR partners have pooled our resources in an international campaign to promote awareness to help locate these children. Each child who is found could benefit from the medical services and unique care that The Progeria Research Foundation (PRF) provides.
“Our goal is to find these children as quickly as possible so we can educate their families and healthcare 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 abroad, 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.
Handbaglady
16. Dec, 2009
Good news on the ‘Find 150′ campaign. Due to GLOBALHealthPR Brazil and their media relations efforts, a child with Progeria has been found. The Progeria Research Foundation is thrilled because only 54 children are currently known to researchers and patient groups across the world.
Handbaglady
26. Jan, 2010
Since my last comment – through the efforts of the media campaign by GLOBALHealthPR – two more children with Progeria have been found in India and Turkey. Great news.