Fragile X Research Foundation
We are very pleased to announce that The Fragile X Research Foundation of Canada has been successful in establishing a Fragile X Clinic at Surrey Place Centre in Toronto. Scheduled to open in June of 2006, it will serve as a centre to assess and treat patients of all ages who have Fragile X syndrome.
Located in the heart of downtown Toronto, Surrey Place Centre is a community-based organization, providing complex diagnostics, counseling, service coordination, behavioural therapy, and educational programs to people living with a developmental disability and their families. The Centre uses community-based interdisciplinary teams to provide a full range of services and interventions including assessment, counseling, audiology, behaviour therapy, speech and language pathology, and medical specialties. These services are offered free of charge to their clients because Surrey Place Centre receives core funding through the Ministry of Community, Family and Children’s Services. The Surrey Place Centre Foundation also raises funds from individuals, corporations, and foundations for additional support. It is affiliated with the University of Toronto, York University, the University of Guelph and many other teaching institutions. It is accredited with the Canadian Council on Health Services Accreditation.
Why start a Fragile X Clinic?
This will be the first dedicated Fragile X Clinic in Canada and it will serve a dual purpose.
The first will be the provision of a facility where affected patients and their families can access physicians with the expertise and knowledge to treat this neuropsychiatric disorder. Patients with Fragile X exhibit a unique constellation of problems, and it is important for this medical expertise to exist, or else the unique problems of Fragile X patients and their families may go unrecognized and inadequately treated. The clinic can also be used for teaching purposes as it grows.
Secondly, the newly established Fragile X Clinic at Surrey Place Centre will be in a position to be the first Canadian centre where the research breakthroughs of the last few years will be turned into routine clinical treatments for everyone with Fragile X. Recent advances in this field have allowed researchers to identify a key therapeutic target affecting synaptic plasticity in the brain.
Once the Fragile X Clinic is established, it will also conduct clinical trials with new drugs that enhance learning, memory and cognitive functioning and will therefore put Surrey Place Centre in a position to make a global impact in the field of neuroscience and autism.
Who will be assessed and treated at the Fragile X Clinic?
The clinic will assess and treat individuals with a mutation of the FMR1 gene.
What is the size of the community that the clinic will serve?
Currently there are approximately 200 known affected families across Canada that are listed in the database of the Fragile X Research Foundation of Canada (FXRFC). However, as a result of improved diagnostic techniques and increased physician awareness, we expect that this number will steadily increase. Patients will be referred to the clinic by the FXRFC. The Fragile X Research Foundation of Canada is a national non-profit organization which is dedicated to funding biomedical research for improved treatment and, ultimately, a cure for Fragile X.
When will the clinic be held?
The clinic will be held every two weeks on Mondays. Each new patient will have a one-hour initial medical assessment. Subsequent case discussions and follow-up appointments will be approximately 30 minutes long.
What will the Clinic do?
Each patient will have a general medical assessment at the clinic with special attention paid to the neglected areas of health in the Fragile X population.
Who will assess patients at the clinic?
All patients will be assessed Dr. Carlo Paribello M.S.M, M.D., Family Physician, President, Medical Director, Fragile X Research Foundation of Canada and Leeping Tao, RN-MN-ACNP, Nurse Practitioner, Surrey Place Centre.
Referral to Allied Health Professionals
Patients will then be referred to allied health professionals at Surrey Place Centre and Toronto General Hospital as required. Health professionals include a geneticist, an occupational therapist, an audiologist, a speech pathologist and a psychologist. The role of each health care professional will be to assess the condition of the patient and design activities and programs that would enhance their individual strengths and support their weaknesses. The recommendations that arise from these assessments will then be given to the patient’s family members, caregivers or workers for implementation by their local healthcare providers.
For further information about the clinic and for patient booking, please contact the office of Dr. Carlo Paribello at (905) 453-9366 or e-mail your request to email@example.com.