What is the "Find the Other 150" Campaign?
"As a parent of a child with Progeria, I don't want other parents to feel helpless in diagnosing and treating their child. 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, PRF
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 13 years.
As of August 2013, we know of 103 children* in 36 countries living with Progeria. 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 efforts. These children and their families and physicians are benefitting from the programs offered by The Progeria Research Foundation, which offers a comprehensive network of research-related programs to promote advances in the field for all children with Progeria, including clinical treatment trials. But statistically, experts believe there are another 100 - 150 children worldwide living with Progeria that have not yet been diagnosed or identified.
*This figure includes 90 children with the classic Hutchinson-Gilford Progeria, who have a progerin producing mutation in the LMNA gene, and 10 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. PRF is the only non-profit organization solely dedicated to finding treatments and the cure for Progeria.
Nearly all 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.
What you can do
If someone you know or a patient you treat has Progeria-like characteristics, please contact Audrey Gordon, President of The Progeria Research Foundation 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.
June 2011 – so many children are being found!: http://www.progeriaresearch.org/number-of-children-continues-to-soar.html
August 2011 – NHL hockey players from the Boston Bruins expand our reach to their home countries: http://www.progeriaresearch.org/prf-bruins-team-up.html