Thanks for taking the time to visit my JustGiving page.

The 22nd April it is my 60th birthday...I have been blessed with good health and good family. So I intend to run 10 miles from Maghera to Swatragh in County Derry (and hopefully back again!) to raise money for, and awareness of, Myhre Syndrome.

My beautiful niece, Caoimhe Rhodes, suffers from this rare genetic disorder. She was only diagnosed last year and is the only such
diagnosis to date in Ireland.

She has, like all the Myhre Warriors, fought this rare genetic disorder to live her life with purpose and dignity. She and they all are our stars.

Myhre Syndrome is a serious progressive restrictive connective tissue disorder caused by a mutation of the SMAD4 gene causing
progressive, proliferative fibrosis, which can affect the skin and internal organs occurring spontaneously or following surgery.

Joints are stiff, and can progress to contractures or
arthritis. The rib cage is stiff (restrictive). Affected individuals often have problems with the cardiovascular and respiratory systems.  Hearing loss, eye problems. Some of these problems gradually get worse and can lead to potentially life-threatening complications. Currently there is no cure.