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" The ”Find the Other 150” 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
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 launched in October 2009, we knew of only 54 children, thus we have seen a tremendous and unprecedented increase thanks in large part to these awareness efforts. These children and their families and physicians are benefitting 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. But statistically, experts believe there are another 150 – 200 children worldwide living with Progeria that have not yet been diagnosed or identified.
As of June 2016, here is where the 135 known children* with Progeria live:
*This figure includes 106 children with classic Hutchinson-Gilford Progeria, all of whom have a progerin producing mutation in the LMNA gene, and 29 children in the Progeroid Laminopathy category who have a mutation in the Lamin pathway but do not produce progerin.
The “Find the Other 150” 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 with offices in the United States, Asia, Western Europe and Latin America, The Progeria Research Foundation (PRF) launched this campaign to proactively search for these children.
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.
If someone you know or a patient you treat has Progeria-like characteristics, please contact us at firstname.lastname@example.org.
Read Exciting Campaign Updates
Since its inception, the “Find the Other 150” campaign has been tremendously successful and has expanded. Check out the links below for details.