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. It is a chance to get together to discuss questions, successes, and challenges.
We facilitate two simultaneous groups:
- A group for parents or caregivers - an opportunity to talk to other parents about concerns, challenges, and successes. Our interdisciplinary staff members will be in attendance.
- A group for our adult patients - a chance to meet each other, participate in some fun exercises and to discuss topical subjects supported by our staff.
For those parents and caregivers unable to attend in person, an on-line weblink is offered to give access to the group from home. Please contact us for the weblink.
Our most recent Peer Support Group took place on Tuesday December 10th, 2019. Please stay tuned for the next event.
“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 22q11 Deletion Syndrome Clinic, offers a 22q Transition Clinic several times per year. This program is one of the first in the world to focus on transition to adult care for patients with 22q. 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.
COVID-19 update Due to the COVID-19 situation, the 22q11 Clinic at the Hospital for Sick Children will not be holding in-person transition clinics. Patients originally scheduled for the transition clinic day in April were rescheduled for individual virtual sessions Tuesday July 28th.
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.
As we reported in our article in May 2020, card users have found the card to be useful in multiple ways. They provide necessary information, speed up interactions with professionals, and help avoid repeat storytelling. If you would like to obtain an electronic copy of the article, please send your request to email@example.com. Thank you.
We began this quality improvement project in late-2014, and have issued medical information cards to 69 patients as of November 2020. 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
The International 22q11.2 Foundations’ Annual 22q at the Zoo – Worldwide Awareness Day (22q at the Zoo) is an international initiative to raise awareness about 22q11.2 deletion syndrome.
The Toronto event is usually 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.
Due to COVID-19, we had a virtual special event in 2020: 22q and Zoom.
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 / Parent 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 was held for parents impacted by 22q. Ania Fiksinski, a graduate student in our Clinic, gave a talk on “Understanding IQ in 22q”.
The 2020 Parent Conference will take the form of monthly, virtual events from November 2020 to May 2021. The theme is Mental Health Matters. Dr. Anne Bassett, our Clinic Director, is scheduled to speak on March 4th, 2021, while Lisa Palmer, our social worker, will speak on May 15th, 2021. To obtain more information and to register, please visit www.22qfamilies.org.
Biennial International 22q11.2 Conference
As a result of the coronavirus (COVID-19) situation and associated travel restrictions, the leadership of the 22q11.2 Society has made the difficult and unprecedented decision to postpone the upcoming 12th Biennial International 22q11.2 meeting scheduled for June, 2020 at Le Meridien Lav Hotel in Split, Croatia until 2021.
Please visit the 22q Society’s Meetings page for more information.
The most recent conference took place in Whistler, B.C., Canada in July 2018. It contained 3 parts:
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