At VIVA! we’ve been busily researching Progeria, also known as the Hutchinson-Gilford Progeria Syndrome, and assisting our GLOBALHealthPR partners in a worldwide search for children diagnosed with the condition.
Progeria is a rare and fatal genetic condition that causes rapid ageing in young children. Progeria symptoms include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, generalised atherosclerosis, heart disease and stroke. Sadly, most of the children diagnosed with Progeria will die from heart disease on average, by 13 years of age.
Currently, there are 80 children living in 31 countries with Progeria, but scientists believe there are approximately 150 additional unidentified children with this condition.
View the 60 Minutes story on British 12-year old girl, Hayley, diagnosed with Progeria.
In the past 10 years The Progeria Research Foundation has identified the gene that causes Progeria and identified a possible treatment for children with Progeria. The Progeria Research Foundation is the only non-profit organisation 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 ageing process,
Most recently, The National Institutes of Health in the United States released new information about a possible new drug treatment for children with Progeria. This exciting new study demonstrates the remarkable pace of Progeria research, while providing further insight into the ageing process that affects us all.
However, more research needs to be done.
In October 2009, the Progeria Research Foundation in collaboration with GLOBALHealthPR (led by Spectrum Science) launched the “Find the other 150” campaign. The initiative aims to boost public awareness about Progeria and to identify all children living with the condition world-wide.
Of the 80 children identified so far, 35 have been identified by our GLOBALHealthPR partners.
While we are yet to identify an Australian or New Zealander currently living with Progeria, we remain optimistic, and ask for your help to identify anyone whose life has in some way, been affected by the condition.
For more information on Progeria, or if you know someone or a patient you treat has Progeria-like characteristics, please contact us or the Progeria Research Foundation.