Progeria Research Support in the UK
Registered Charity No. 1115846
Hayleys Hope is a UK based charity which aims to discover the cure and effective treatment for Progeria and its aging related disorders by supporting the charitable work of the Progeria Research Foundation.
Progeria, or Hutchinson Gilford Progeria syndrome, is an extremely rare, fatal genetic condition of childhood with striking features resembling premature aging. The word Progeria is derived from the Greek meaning “prematurely old”. Hutchinson Gilford Progeria accelerates the process of aging to about eight times the normal rate. Because of this accelerated aging, a child with Hutchinson Gilford Progeria that is ten years old will have similar respiratory, cardiovascular, and arthritic conditions of that of an eighty year old.
Progeria is a life limiting disease that results in the Progeria children dying of heart disease and other ageing related problems at an average age of 13, with a range of about 8-21 years of age.
At present there are about 40 known cases around the world and just 2 in the UK.
In 2003, The Progeria Research Foundation’s collaborative research team made history with the discovery of the Progeria gene. This discovery not only led to further understanding of Progeria, but scientists now know that studying Progeria can help us learn more about heart disease and the normal aging process that affects us all.
Since the ground-breaking gene discovery, volunteers and supporters of The Progeria Research Foundation (PRF) have worked tirelessly to bring us to the next steps -- treatment and a cure. The dedication and support of researchers, clinicians, families of children with Progeria and people like YOU has brought us to another exciting crossroads in the search for a cure.
Researchers have now identified a potential drug treatment for children with Progeria, with a drug called
Farnesyltransferase inhibitors or FTI's.
For the first time, we have in front of us a possible treatment...or even cure...for children with Progeria.
Hayley is a 9 year old girl from East Sussex, UK who has Progeria. Hayley and her parents have been actively involved in raising awareness about Progeria since she was diagnosed in 1999. Following massive media interest through her website, hayleyspage.com, television documentarys, local and national press articles there have been numerous offers of help with fundraising so it was decided to organize the charity, 'Hayleys Hope'
If you are interested in helping in any way please contact us by e mail at
or by mail at
Hayleys Hope
PO Box 178
Bexhill on Sea
East Sussex
TN40 9AF