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 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 exercises 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 gathering was held on Thursday, November 1st, 2018. Please visit this website again in 2019 for the date of the next session.
Children and teenagers with 22q receive medical care from children’s hospitals until they reach about 17 or 18 years old. At that point, many of them continue to receive care at hospitals for adults.
To help patients make the transition smoothly to the Dalglish Family 22q Clinic at the Toronto General Hospital, the 22q Deletion Syndrome Clinic and the Good 2 Go Team at SickKids have developed the Transition Day Program. This full day program gives individuals with 22q information about adult care and shows how we make a smooth transition.
The Dalglish Clinic is an active partner in the Transition Day Program for individuals with 22q. We welcome the participants and ease their anxiety as they meet their new medical providers.
We most recent 22q Transition Clinic took place on Tuesday, May 15th, 2018. Please stay tuned for information on the next event.
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 57 patients as of June, 2018.
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 Toronto Zoo Day is an international initiative to raise awareness about 22q11.2 deletion syndrome. The Toronto event is co-hosted by both the SickKids 22q Clinic and the Dalglish Family 22q Clinic. This enjoyable day gives families, friends, and professionals a chance to socialize, network and raise public awareness of 22q11.2 deletion syndrome.
We had a great day on Zoo Day 2018.
22q Family Conference
The 22q11.2 Family Conference is an annual event held at SickKids in Toronto. This conference gave individuals with 22q and their families the chance to learn more about 22q and to meet other families sharing the same experiences. Information sessions for parents, teens and young adults were offered on topics such as:
- Health and Nutrition
- Impact on Siblings
- Mental Health Needs of Teens
- Navigating the Education System
Biennial International 22q11.2 Conference
Every two years, the International 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.
Photos from the 2018 conference are available on the website of the International 22q11.2 Society. Here is a photo of our group (Photos of our group can also be found on a third-party photo-sharing site):
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