Toronto (July 18, 2012) - The W. Garfield Weston Foundation has made a landmark donation of $4 million to establish the first multidisciplinary clinic in the world devoted to adults with 22q11.2 Deletion Syndrome (22q11.2DS).
22q11.2 DS is a genetic syndrome that can result in psychiatric, cardiac, endocrine and neurologic abnormalities. The complex and variable clinical manifestations of 22q11.2DS make the provision of comprehensive care for patients with this disorder challenging.
"I am a parent of a young woman who has this complex genetic disease, diagnosed by Dr. Jeff Daskalakis and Dr. Anne Bassett in 1998. Since then it has been very difficult to negotiate the health care system as so many different medical aspects are involved in the treatment. It is stressful and time-consuming for both the patient and the caregiver," said Camilla Dalglish. "There has been a great need for a dedicated clinic to integrate services for adult patients. As a parent, caregiver and member of The W. Garfield Weston Foundation, I am delighted that the University Health Network has agreed to open such a clinic. I am sure that families like ours will welcome this integrated approach."
Dr. Sidney Kennedy, Psychiatrist-in-Chief of University Health Network and Professor of Psychiatry at the University of Toronto, says the gift will allow UHN caregivers to provide a comprehensive, multidisciplinary clinical service that will make life better for adults with genomic disorders.
"We are tremendously grateful to the Weston Foundation for identifying and funding this unique service for adult patients with 22q11.2DS," said Dr. Kennedy. "UHN can offer expert integrated clinical care and research initiatives for the range of clinical challenges that this disease presents, particularly in psychiatric, cardiac and neurological specialties."
The Dalglish Hearts & Minds Clinic, located at Toronto General Hospital, will be directed by Dr. Anne Bassett, Canada Research Chair in Schizophrenia Genetics and Genomic Disorders and Professor of Psychiatry at the University of Toronto. It will be co-directed by Dr. Alan Fung, Assistant Professor of Psychiatry at the University of Toronto. Both Drs. Bassett and Fung are experienced in the provision of multidisciplinary care to adults with genetic disorders and their families.
The Clinic's team will provide the following services:
- Multidisciplinary, comprehensive care and services for adults with 22q11.2DS, their families and their caregivers – according to evidence-based best practice – with integration, coordination and provision of services covering major specialties
- Education of clinicians, the general public and adults with 22q11.2DS, their families and their caregivers about 22q11.2DS and optimal care for adults
- Translation of new knowledge about 22q11.2DS to the community
- Advancement in research in clinical and molecular studies of 22q11.2DS
Because patients with 22q11.2 Deletion Syndrome can have psychiatric, endocrine and congenital cardiac pathology, their management is complicated. The Dalglish Hearts and Minds Clinic will provide a unique environment that will bring a diverse group of health care providers together to manage patients with 22q11.2 Deletion Syndrome in one location – this will benefit patients and their families. With the support of the Weston Foundation, we can advance the Clinic's research platform through integration into the Peter Munk Cardiac Centre biobank and database. This approach will allow us to identify potential molecular therapies for patients with 22q11.2 Deletion Syndrome to further aid in genetic research," said Dr. Barry Rubin, Medical Director of the Peter Munk Cardiac Centre. "As worldwide leaders in the treatment of congenital heart disease, health care providers in the Peter Munk Cardiac Centre will make a significant contribution to the Dalglish Hearts and Minds Clinic by providing expert cardiovascular care for patients with 22q11.2 Deletion Syndrome.
The 22q11.2DS is a recognizable pattern of physical and developmental features associated with a missing piece of genetic material (deletion) from chromosome 22. The condition is sometimes referred to as velo-cardio-facial or DiGeorge syndrome. 22q11.2DS is a genetic condition that is often not inherited from either parent – the genetic change is a new or "spontaneous" change in the human genome.
Individuals with 22q11.2DS usually have a variety of features, ranging from mild to more serious in different people with the condition. Some are developmental in nature and are present at birth or found in early childhood. Examples may include congenital heart defects, abnormalities of palate development, speech and language problems, and learning difficulties. Other associated conditions may arise later on, including thyroid and/or calcium problems and treatable psychiatric illnesses like anxiety disorders or schizophrenia.
The Dalglish Hearts and Minds Clinic is scheduled to officially open in late 2012.
About The W. Garfield Weston Foundation
The W. Garfield Weston Foundation is a private Canadian family foundation, established in the 1950's by Willard Garfield Weston and his wife Reta. In 1924 Garfield inherited his father's company and during his life established bakeries and other successful enterprises throughout Canada and in many parts of the world. Today, these businesses include the George Weston Limited and Loblaw Companies Limited, companies in food retailing, processing and distribution. The founders believed that as the funds are generated through the hard work and success of these Canadian companies, grants should be given in Canada for the benefit of Canadians. For three generations, the W. Garfield Weston Foundation has maintained a family tradition of supporting charitable organizations across Canada. Today the Foundation directs the majority of its funds to projects in the fields of land conservation, education, and science in Canada's North.
About Toronto General & Western Hospital Foundation
Toronto General & Western Hospital Foundation raises funds for research, education and the enhancement of patient care at Toronto General Hospital and Toronto Western Hospital as well as for their respective research arms, Toronto General Research Institute and Toronto Western Research Institute. The Foundation's vision is to enable global leadership and innovation in health by developing and sustaining strong relationships with University Health Network stakeholders. For more information: www.tgwhf.ca
About University Health Network
University Health Network consists of Toronto General, Toronto Western, Princess Margaret Hospitals and the Toronto Rehabilitation Institute. The scope of research and complexity of cases at University Health Network has made it a national and international source for discovery, education and patient care. It has the largest hospital-based research program in Canada, with major research in cardiology, transplantation, neurosciences, oncology, surgical innovation, infectious diseases, and genomic medicine. University Health Network is a research hospital affiliated with the University of Toronto.
