A worldwide effort is underway to find children with Progeria, a rare and fatal disease characterized by premature aging in young children. At one time, it was thought to effect 1 in 4 to 8 million global newborns. New data has proven otherwise.
Known as Hutchinson-Gilford Progeria Syndrome (HGPS), no treatments were available in 2010 for Progeria children. The Progeria Research Foundation started a campaign called "Find the Other 150," referring to the unknown children who had progeria throughout the world in case a cure could be found.
Since that time, 100 children with Progeria have been found. Because of the recent increase in numbers of Progeria children who were found, data shows a 44% increased from the 2010 estimates. Over 28 children have recently been found in Brazil, China, Colombia, India, Ireland, Japan, Korea, Mexico, Pakistan, Philippines, South Africa, and the United States.
In 2010, ABCNews wrote that " there was a clinical trial underway, followed by another ending in the following December. The analyzed data resulted in further clinical trials, leading to a significant breakthrough in science that may help these children live longer without pain from aging - brittle bones, strokes, arthritis, or even heart problems.
Hayley Okines, Lindsay Ratcliffe, and Kaylee Halko (age 8), and other participants with Progeria have recently started a Progeria clinical trial that showed remarkable results and improvement in one or more areas of their condition. In a recent letter to me, the drug FTI drug lonafarnib was stated as the first known effective treatment for children with the "rapid aging disease."
Yet, the drug is a treatment, not a cure.
This miracle is occurring thirteen years after the Progeria Research Foundation was founded. The letter stated that links have been found between Progeria, aging and heart disease in the general population. Unfortunately, more work is still needed to search for a cure, one that will guarantee life for these endearing children. Larger clinical trials are now being pushed forward using data from previous successful trials, using the drug lonafarnib to seek a cure in the near future.
Here are Bing images of children and youth who have Progeria, many are deceased due to a lack of treatment and many are alive due to the new med. Hopefully, enough money is donated so the research for these children can continue toward a cure. They travel across the continents to receive their treatments, in hope they will live a normal life like so many other chlldren.
I pray they can.
NOTE: Other progeroid syndromes include Werner's syndrome, also known as "adult progeria" which does not have an onset until the late teen years, with a life span into the 40's and 50's.