The Dalglish Family 22q Clinic

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 22q@uhn.ca. Thank you.

We began this quality improvement project in late-2014, and have issued medical information cards to 81 patients (79 of whom have standard 22q11.2 deletions) as of February 2023. We also continue to update the cards for them. If you are a patient at the Dalglish Clinic and would like to receive a card, please contact our clinic at (416) 340-5145.

We invite you to join us for our upcoming Peer and Caregiver Support Groups! These groups are a chance for patients and caregivers alike to get together to meet, discuss questions, successes and challenges.

When: Wednesday March 15^th, 2023 from 2:00 pm – 3:00 pm

Where: Online. This is a virtual support group. The link will be sent out closer to the date.

We facilitate two simultaneous groups:

• A group for parents or caregivers - an opportunity to talk to other parents and caregivers about concerns, challenges, and successes.
• 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.

All patients and caregivers must be registered with our Clinic to join in the group. At this time, only residents of Ontario may participate in these groups, due to unfortunate limitations on allied health professions.

Please RSVP by March 8^th, 2023 by calling 416-340-3729 or emailing 22q@uhn.ca.

Look forward to seeing you on the screen!!

“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.

Our next Transition Clinic will take place on Tuesday, May 9^th, 2023.

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 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.

Our next event will take place at the Toronto Zoo on Sunday, June 4^th, 2023. Please note that Toronto’s event date is different from that of the International 22q11.2 Foundation.

Register for 22q at the Zoo Toronto Event

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.

The 2020 Parent Conference took the form of monthly, virtual events from November 2020 to May 2021. The theme was Mental Health Matters. Dr. Anne Bassett, our Clinic Director, spoke on March 4^th, 2021, while Lisa Palmer, our social worker, spoke on May 15^th, 2021.

The Parent Conference hosted an online event called “22q and Strategies for School Success” on January 29^th, 2022. Donna Cutler-Landsman, an educational consultant, shared her expertise in educating children with 22q.

If you have any questions about the series, please contact the organizers at connect22qfamilies@rogers.com.

For more information, please visit www.22qfamilies.org.

The 12^th Biennial International 22q11.2 Conference took place in person at Le Meridien Lav Hotel in Split, Croatia in July 2022. Our team members presented our recent findings and led discussions in these meetings:

• Family Meeting – June 26 (Sunday) to 28 (Tuesday) [Program]
• IBBC and Network of the Americas – June 28 (Tuesday)
• Professional Meeting – June 29 (Wednesday) to July 1 (Friday) [Program]

Here is a photo of some members of our group:

From left to right:

• Samantha D’Arcy, Registered Dietitian
• Anne Bassett, Psychiatrist and Director of the Dalglish Family 22q Clinic
• Erik Boot, Research Associate and Former Dalglish Fellow
• Lisa Palmer, Registered Social Worker
• Lily Van, Psychiatry Resident
• Ania Fiksinski, Former Graduate Student

Recent conferences

Whistler, BC, Canada (2018)