BACKGROUND

Sudden Arrhythmia Death Syndrome or Sudden Adult Death Syndrome as the title implies, culminates in a person dying very suddenly and unexpectedly. Sudden death in the family is particularly traumatic for the relatives and friends of the victim as this type of death can occur in an apparently fit and healthy young person who has shown absolutely no sign of illness. In some sudden arrhythmia deaths there are no signs at all on autopsy testing, this is due to faults within the electrical activity of the heart, which cannot be detected after death.

One such condition is called the Long QT Syndrome (LQTS). With the Long QT Syndrome the only symptoms to watch out for are fainting spells or sudden death, it is therefore extremely important that anyone with any symptoms of syncope (fainting) should be screened for the condition, early identification can reduce the mortality rate.

HISTORY OF THE SADS FOUNDATIONS.

In the mid 1970’s, Dr, G.Michael Vincent and his associates began studying and treating patients with the Long QT Syndrome (LQTS). LQTS is a genetic cardiac disorder that can cause sudden death in young people if left untreated. As Dr. Vincent’s and his colleagues’ knowledge about LQTS grew, they were shocked and frustrated by the number of young people remaining undiagnosed, untreated and ultimately dying with this disorder. Despite several research findings and medical publications, few physicians screened for LQTS and young people were dying at an alarming rate from this very treatable disorder.

In 1991, a group of scientists, led by Dr. Mark Keating, at the University of Utah, discovered the chromosomal location of a gene causing LQTS.This finding caused a great deal of excitement in both the lay and medical communities. Dr. Vincent, his associates and families with LQTS believed it was an opportune time to begin a formalized, nationwide educational effort to help stop sudden cardiac death in young people.

The Sudden Arrhythmia Death Syndromes (SADS) Foundation in Utah was established in December 1991 for the purpose of helping prevent sudden and unexpected death in children and young adults.

The Sudden Arrhythmia Death Syndromes (SADS) Foundation in Canada was established in 1995, by Pam Husband after her 16 year old son Greg died suddenly during the night in 1990.

Nancy Busse established The Alberta Chapter in 1999 after her daughter Susan died in her sleep whilst on vacation, she was 23 years old. 

The Australian Sudden Arrhythmia Death Syndromes (SADS) Foundation was first founded in October 1998 becoming official in June 16th 1999.

Anne Jolly founded The Sudden Adult Death Syndromes (SADS) Foundation in the UK in March 2000 after her fit and healthy 16 year old son Ashley died unexpectedly in his sleep.

Each of the SADS Foundations has the same goals in mind:

Family Support:
To assist families and friends of those affected by the Long QT Syndrome and other arrhythmia disorders.

Education:
To provide information and educational resources to the lay public and to health care providers in order to promote early diagnosis and treatment.

Research:
To encourage and to fund research on the Long QT Syndrome and other genetic cardiac diseases predisposing the young to sudden death.

Resource Services:
To serve as a patient referral resource and to provide information to physicians who care for patients with arrhythmia disorders.

Geneology Information:
To identify individuals and families by pedigree development and support diagnostic testing where appropriate.

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