Sudden Arrhythmia Death Syndromes (SADS) Foundation.

In the mid 1970's Dr G Michael Vincent and his associates began studying and treating patients with the genetic long QT syndrome (LQTS).  As their knowledge about LQTS grew, they were shocked and frustrated by the number of young people remaining undiagnosed, untreated, and ultimately dying with this arrhythmia.

The Sudden Arrhythmia Death Syndromes (SADS) Foundation,  a non-profit charitable organisation, was established on December 12, 1991 for the purpose of helping prevent sudden cardiac death in children and young adults.  The SADS Foundation is dedicated to providing information, assistance, and HOPE. 

http://www.sads.ca

The Canadian SADS Foundation

The Foundation was set up by Pam Husband after her 16 year old son Greg died suddenly during the night in 1990.  The Toronto Star ran Greg's story and as a result several Canadian Families recognised that these symptoms had also affected a member of their family.  Within a few days of the article Pam had been contacted by over 250 families.  Pam went on to form the Canadian SADS Foundation as a charitable organisation in 1995.

The Alberta Chapter was established in 1999 by Nancy Busse after her daughter Susan also died in her sleep whilst on vacation, she was 23 years old.  An article about Susan in the Alberta newspapers prompted families to contact Nancy and once again families came together and united.

http://www.sads.org.au

SADS Australia was set up by Julie Foley.  Julie started the organisation after four of her five children were diagnosed with Long QT Syndrome; a potentially fatal heart condition if it is not detected and treated.  Three of her four children suffered from 'fainting episodes' over a period of three years before finally discovering the real reason behind their fainting.  During numerous visits to medical establishments they were told the fainting was due to; Epilepsy, A Virus, Low Blood Sugar, Attention Seeking, Febrile Convulsions, Low Blood Pressure, Night Terrors

Eventually, after insisting herself that the children had ecg's they were diagnosed with Long QT Syndrome.  Three of her children now have pacemakers and the four children affected will take beta blockers for the rest of their lives.  For Julie it was essential to create awareness of this little known condition in order to be able to save lives of young ones affected with LQTS.

http://www.qtsyndrome.ch

QTsyndrome.ch started in 1997 as an amateur internet project and was first run under the name of "European Long QT Syndrome Information Center". Launched by a Swiss long QT syndrome sufferer and a Swiss webdesigner, QTsyndrome.ch aimed at collecting information about a disease that was little known publicly at this time by reaching a worldwide audience.

The project's main objective is now to provide comprehensible information on long QT syndrome for patients and their relatives and to be a rudimentary guide for medical trained people. Furthermore, QTsyndrome.ch.

http://perso.club-internet.fr/celine1/

Association du Syndrome du QT Long/Organization of the Long QT Syndrome

The French LQT website was established in 1998 and is run by Celine, it has medical information and family histories. Written in French and English.

The Helen Kirkland Fund for Cardiac Research      

Trust raises funding for research into LQT. e-mail Phone 020 8462 1670