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.
The next group will be held soon, so stay tuned for more information!
Becoming an adult is a process that sparks change in everyone’s lives, including individuals with 22q. “How will 22q symptoms affect my life as I become an adult?” This is a common question for many of our patients and their families.
The Dalglish Family 22q Clinic, in collaboration with The SickKids Good 2 Go Transition Program and The SickKids 22q Deletion Syndrome Clinic, offers the 22q Transition Clinic several times a year. This full day program gives individuals with 22q information about adult care and shows how we make a smooth transition from the 22q Clinic at SickKids to our Dalglish Family 22q Clinic at the Toronto General Hospital.
We look forward to holding our next 22q Transition Clinic on July 18th, 2017.
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 47 patients as of January, 2017.
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.
Unfortunately, our 2017 event has been cancelled due to a strike at the Toronto Zoo. We look forward to having fun together next year.
22q Family Conference
On November 12th and 13th, 2016, the 3rd annual 22q11.2 Family Conference was 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 their 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
Participants enjoyed the keynote presentation from Quinn Bradlee, founder of Friends of Quinn, an online community for individuals with 22q, and many other inspiring speakers.