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Find The Children

What is the “Find the Children” Campaign?

“The ‘Find the Children’ campaign will allow PRF to provide these children with life-changing treatments, and connect them with local medical professionals and other families of children with Progeria.”

Dr. Leslie Gordon

Medical Director, The Progeria Research Foundation

 

 

PRF’s search for undiagnosed children

Imagine your child living with an unknown, physically obvious disease – no one had ever seen anyone like your son or daughter, and no one knew what to do to help. But one day, thanks to an on-line article or TV story, you, a relative, teacher, doctor or neighbor saw a child with Progeria, realized the diagnosis and found PRF.  Now, a world of support, answers and HOPE is there for you.

Progeria, a rare, fatal, rapid-aging disease, is taking the lives of children around the world. All children with Progeria die of heart disease (heart attacks and strokes) at an average age of 14 years. The Progeria Research Foundation is on a mission to cure Progeria. With your help, every child in the world can benefit not only when the cure is found, but also NOW from the advances we’ve made. When this campaign first launched in October 2009, we knew of only 54 children. In 2019, we now know of 161 living children worldwide with Progeria. We’ve seen a tremendous and unprecedented increase thanks in large part to these awareness efforts. These children and their families are benefiting from the programs offered by The Progeria Research Foundation, including clinical trials that have resulted in treatments that are giving the children stronger hearts and longer lives.

Experts believe there are 350 – 400  children worldwide living with Progeria, with approximately 200 who have not yet been diagnosed or identified. Statistically, about 2/3 are believed to be located in China and India — undiagnosed, untreated, and in some cases ostracized in their communities because of their physical appearance.

The “Find the Children” campaign is designed to do exactly that: search globally for the undiagnosed children with Progeria so that they, too, can have access to the unique care they need, and help advance clinical science for Progeria. In partnership with GlobalHealthPR, a worldwide health communications group, as well as its sister agencies abroad – MediaMedic in India, and Madison Communications in China, PRF is re-launching our international awareness campaign to assure the greatest possible reach.

Children with Progeria have a similar appearance. Symptoms of Progeria include growth failure, loss of body fat and hair, osteoporosis, aged-looking skin, stiffness of joints, hip dislocation, generalized atherosclerosis, and cardiovascular (heart) disease.

As of December 1, 2019, here is where the 162 known children* with Progeria live.

*This figure includes 125 children with classic Hutchinson-Gilford Progeria, all of whom have a progerin producing mutation in the LMNA gene, and 37 children in the Progeroid Laminopathy category who have a mutation in the Lamin pathway but do not produce progerin.