Bangkok--10 Sep--Mileage (Thai)
Do you know of anyone living with Progeria? Progeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS) is a rare, fatal genetic condition characterized by the appearance of accelerated aging in children. Symptoms of Progeria include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation, and cardiovascular (heart) disease, among others.
The Progeria Research Foundation (PRF) has just re-launched its worldwide “Find the Other 150” campaign to locate the remaining unidentified children living with this rare and fatal rapid-aging condition. PRF will be flying these children to Boston, Mass., in the United States to participate in the Triple Drug Trial, the latest clinical trial to test potential treatments for Progeria.
When the “Find the Other 150” campaign was first launched in 2009, only 54 children in 30 countries living with Progeria had been known. In less than four years, the campaign has helped to find another 50 children from seven more countries across five continents. Statistically, experts believe there are another 100 - 150 children worldwide living with Progeria who have not yet been diagnosed or identified.
Audrey Gordon, President and Executive Director, PRF said: “At the launch of the campaign, we said that finding even one child would make the campaign a success, but we’ve significantly exceeded our expectations and identified nearly 50 additional children in a few short years. Our success is a testament to the power of global collaboration. We now know that through our continued global efforts, we can find even more children with Progeria in order to provide them with unique and essential medical services and care, and significantly further medical research to develop treatments, and ultimately to find a cure.”
The children, if found, will have the chance to enter potentially life-saving clinical drug trials made possible through PRF’s financial and research efforts.
Leslie B. Gordon, Medical Director of The Progeria Research Foundation said: “We need to continue to find as many children as we can. We now know the gene that causes Progeria, and just last September announced the results of our first clinical trial and its success in slowing the progression of the condition. With the expansion of the Triple Drug Trial and the tools we have to treat it, it’s time to find other children living with Progeria around the world,” said Dr. Gordon.
The Progeria Research Foundation has collaborated with Mileage Communications Group, a member of GLOBALHealthPR, the world’s largest independent public relations group specializing in health and medical communications worldwide for this campaign.
Should you know of a child living with Progeria Syndrome, please contact either Khun Vichai or Khun Chonticha at (02) 632-8356 between 10:00 a.m. to 4:00 p.m., Monday to Friday. We would be pleased to coordinate the arrangements with The Progeria Research Foundation. Please help these children and their parents by letting them know that we are searching for them.