Thanks for taking the time to visit my JustGiving page. Sadly, in 2012 my intelligent, beautiful and talented daughter died suddenly from an aortic dissection linked to Loeys- Dietz Syndrome.  Stevie was just 19 years old.  There seems to be very little known in the UK about this rare genetic disorder and we are trying to raise awareness amongst the medical community and newly diagnosed families by arranging an educational conference and patient day in Oxford. This will be open to all those whose lives have been affected by Loeys-Dietz Syndrome or Marfans Syndrome. Stevie always wanted to be a teacher and so in this way we are staying true to her vision and honouring her memory. Please direct donations by writing in the leave a message  box: to go to Fund 0583. Please give what you can no matter how small. It's all appreciated. Thank you again.

The conference/patient day was a huge success, the first of its kind outside of North America. Thank you all for your generosity and good will. Thanks to you we were able to have a fabulous educationally packed day with speakers covering cardiology, genetics,muscuuloskeletal aspects and many other aspects pertaining to Loeys-Dietz Syndrome. We had 180 attendees. People came from, America, Russia, Germany, Sweden, Belgium, Ireland and the UK.  And we have had very positive feedback from them.  Drs Loeys, and Dietz also lectured to over 80 doctors on the Friday afternoon prior to the patient and family day. This is groundbreaking research and education, and you have helped fund it, so again, a big thank you. And a massive thank you to Dr Alex Pitcher from The John Radcliffe Hospital without whom this fantastic event would not have happened. 

The research is ongoing and so I have decided to leave this page open should anyone wish to donate further.  On behalf of Stevie, we thank you from the bottom of our hearts. xxx

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