Sue is married with two grown up children and lives in the Midlands. Her youngest was diagnosed with KS in 1992. Initially she searched for any information throughout the world (before the internet!). Managed to find some and wondered if others were going through the same ordeal. She got in touch with Contact A Family, where she ultimately met with the co-founders of the group.
HER ROLE IN KSSG
Sue manages the National Helpline and liaises with recognised medical professionals, experienced in KS. She is involved in the day to day running of the helpline and keeps up to date with any updates worldwide; collation of information into anonymous statistics and these are used in research and medical papers that our Medical Advisors submit. She was instrumental in helping to set up the first Kawasaki Clinic in the UK. Sue has been involved with several published medical papers.
On a lighter note, recently she was ask to quote on an article to do with KS in a UK newspaper and on searching the net, this quote was found translated into nearly half the worlds languages!
Nicky is married with three children and one granddaughter (so far!), and lives in the South East of England. She works as a full time PA. Her youngest was diagnosed with KS in 1993. Initially using local media she searched for other parents, resulting in 12 contacting her. One of these contacts was instrumental in putting her in touch with Contact A Family where she met the other co-founders of the Support Group.
HER ROLE IN KSSG
Nicky is primarily involved with the financial side of the group plus general admin, website maintenance and fundraising support. She was instrumental in organising the Family Day in 1996, where Panorama filmed for a programme on Kawasaki aired in November 1996.
Nicky & Sue are Co-Founders of the KSSG in the UK. Some credit for setting up the group must go to the third original member, Zaen.