Progeria Support in the UK
Registered Charity No. 1115846
Hayleys Hope is a UK based charity which aims to support children and their families living with the genetic ageing disorder, Progeria.
Hayley Okines is a 13 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'. In 2010 Hayleys Hope in conjuction with the Progeria Family Circle, organised the first ever Progeria Reunion held in the UK with 16 familes from all over Europe attending for a week of fun, laughter and sometimes even tears. Following the great success of this meeting we have approached to hold a second reunion to be held in England in October 2011. Please help us to make another dream to become a reality once again.
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 80 known cases around the world and just 4 in the UK.
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.
If you or your company are interested in helping support the reunion in any way please contact us…
or by mail at
Hayleys Hope
PO Box 178
Bexhill on Sea
East Sussex
TN40 9AF