Special Programs and Events
In addition to medical and counselling appointments, our Clinic offers the following programs for our patients.
Peer Support Groups
The Dalglish Family 22q Clinic holds peer support groups periodically for individuals with 22q and their parents or caregivers. We facilitate two groups, which each run for about 90 minutes:
A group for parents or caregivers to talk to other parents about concerns, challenges, and successes.
A group for our adult patients to meet each other, participate in some fun activities and to discuss topical subjects with staff facilitation.
For those parents and caregivers unable to attend in person, an on-line weblink is offered to give access to the group from home.
Our most recent Peer Support Group took place on April 4th, 2019. Please stay tuned for information on the next session.
“How will 22q symptoms affect my life as I become an adult?” is a common question for many of our patients and their families.
The Dalglish Family 22q Clinic, in collaboration with the the SickKids Hospital 22q Deletion Syndrome Clinic, offers a 22q Transition Clinic several times per year. This full day program gives teens with 22q and their caregivers information about adult care and enables a smooth transition from the 22q Clinic at SickKids to our Clinic at the Toronto General Hospital.
This program is one of the first in the world to focus on transition to adult care for patients with 22q. We recently held a 22q Transition Clinic on April 16th, 2019.
Medical Information Cards
Many adults with 22q11.2DS have multiple health concerns and long lists of medications. Some of them also have intellectual disabilities and are therefore unable to adequately explain their health conditions. If these patients need medical help urgently, or if they encounter medical professionals who are not familiar with 22q11.2DS, they (or their family members) have a hard time providing crucial information to those who try to help.
To solve this problem, our Clinic has been offering personalized medical information cards to our patients. These are wallet-sized, laminated paper cards that show emergency contact information on one side and personal medical information on the other. We began this quality improvement project in late-2014, and have issued medical information cards to over 60 patients as of September 2019.
If you are a patient at the Dalglish Clinic and would like to receive a card, please contact our clinic at (416) 340-5145.
22q at the Zoo
22q at the Zoo is an international initiative to raise awareness about 22q11.2 deletion syndrome. The Toronto event is co-hosted by the 22q Deletion Syndrome Clinic at SickKids Hospital and the Dalglish Family 22q Clinic. The focus of the day is for individuals with 22q, their families and Clinic staff to socialize, network and raise awareness of 22q in the community. Participants also have the chance to join in fun activities with their friends and families and enjoy a day at the Toronto Zoo.
Toronto's 2019 event of 22q at the Zoo took place on May 26th (Sunday). Please enjoy these photos.
22q Family Conference / Parent Conference
The 22q11.2 Family Conference is an annual family-organized event held at SickKids in Toronto. This conference gives individuals with 22q and their families the chance to learn more about 22q and to meet other families sharing the same experiences.
On November 3rd, 2018, the 5th Annual 22q11.2 Family Conference was held at SickKids Hospital in Toronto. The focus of this conference was education. Information sessions were primarily aimed at parents of young children, but also some for teens and young adults were offered on various topics. Our Clinic Social worker, Lisa Palmer, played a key role in presentations during the conference.
On November 2nd, 2019, a Parent Conference will be held for parents impacted by 22q. Ania Fiksinski, a graduate student in our Clinic, will give a talk on "Understanding IQ in 22q". For more information and to register, please visit www.22qfamilies.org.
Biennial International 22q11.2 Conference
Every two years, the 22q11.2 Society organizes the Biennial International 22q11.2 Conference. In recent years, the conference contains 3 main parts, as seen in the programs from 2018: the International Brain and Behaviour Consortium (IBBC) Meeting, the Professional Meeting, and the Family Meeting.
Along with researchers and medical professionals from 16 countries (including Canada), staff from the Dalglish Family 22q Clinic and the Clinical Genetics Research Program (CGRP) from the Centre for Addition and Mental Health (CAMH) enjoyed great presentations and discussions at the conference. We also presented our research projects. Our research analyst, Tracy Heung, received the the Junior Investigator's Award in the conference. Our graduate student, Ania Fiksinski, won the same award in 2016.
Back row (L to R):
- Christian Marshall, Geneticist
- Erik Boot, Research Associate and Former Dalglish Fellow
- Jacob Vorstman, Child Psychiatrist
- Elemi Breetvelt, Mr. Rajeeb Mukherjee BSc (Hons) (London School of Economics) Fellow in Schizophrenia
- Spencer Van Mil, Medical Student
- Tommaso Accinni, Observer
Middle row (L to R):
- Lisa Palmer, Registered Social Worker
- Samantha D'Arcy, Registered Dietitian
- Joanne Loo, Patient and Family Educational Tool Developer and Website Manager
- Lily Van, Psychiatry Resident
- Ania Fiksinski, Graduate Student
- Anne Bassett, Psychiatrist and Director of the Dalglish Family 22q Clinic
Front row (L to R):
- Tracy Heung, Research Analyst
- Eva Chow, Psychiatrist