New website launched

We have launched our new website and will be adding even more content soon. Please check back!

Adult survivors of child heart defects returning to hospital (Article on the Toronto Star)

Dr. Erwin Oechslin is the director of the adult congenital heart disease program at the Peter Munk Cardiac Centre and one of the cardiologists at the Dalglish Clinic. He had an interview with the Toronto Star about the importance of consistent check-ups for individuals born with heart defects. The article, "Adult survivors of childhood heart defects returning to hospital", was published on June 10, 2014.

Dr. Bassett received the DiGeorge Medal

Congratulations to our Clinic Director, Dr. Anne Bassett, who received the Angelo DiGeorge Memorial Medal in June 2014 during The Ninth Biennial International 22q11.2 Deletion Syndrome Meeting in Mallorca, Spain. Information about the medal is available in the Our Awards section of this website.

New and updated pamphlets now available online

We have recently published two new pamphlets and updated another through the Patient Education Department at the University Health Network. You can find the new pamphlets, "Could Congenital Heart Defects be Related to a Genetic Condition?" and "Could Schizophrenia be Related to a Genetic Condition?", as well as the updated clinic pamphlet on our pamphlets page.

Peer Support Groups meeting again in November

Our Peer Support Groups will be meeting again on Thursday November 20th. Please check our events page for further information. The registration deadline is Monday November 17th. Hope to see you there!

"Graduates" from 22q Clinic at the Hospital for Sick Children now registered with us

Seven young adults from the 22q Clinic at the Hospital of Sick Children (HCS) "graduated" from pediatric care on Tuesday, October 14th and entered the adult care system.

The 22q11.2DS Transition Program started at HCS in the morning. The graduating young adults and their parents enjoyed several interactive activities throughout the morning. They also had a chance to touch base with their HCS physicians. There was a pizza lunch for all, and the young adults received graduation certificates.

After lunch, everyone walked over to Toronto General Hospital to meet the staff and view the facility at The Dalglish Family Hearts and Minds Clinic. Some also took the opportunity to book appointments. We enjoyed meeting these young adults, and we look forward to working with them and their families in the future to optimize their health and well-being.

November is 22q Awareness Month!

Please visit the facebook page of the 22q Awareness Month movement. The group was originally set up to raise awareness of genetic syndromes related to 22q11.2 for 22 days but is here to stay. You can find stories of individuals who are living with the syndrome as well as helpful information.

You can also support the cause by collecting the 22q Awareness Days picbadge.

New section on our website: Recommended reading

We have added a new section to our website. Under “Resources”, you can find
“Recommended Readings (non-22q11.2DS)”. The first article that we have posted is called “Canada’s Advantage in Genomic Medicine” by Stephen Scherer, who is a Senior Scientist and the Director of the Centre for Applied Genomics at The Hospital for Sick Children (SickKids) in Toronto as well as a Professor of Medicine at the University of Toronto.

Postponed: Webinar on nutrition

The 22q University Webinar called "Nutritional Health and its Impact on Adults with 22q11.2 Deletion Syndrome" originally scheduled for December 15th will be postponed until the New Year. We are sorry for any inconvenience this has caused. We look forward to hearing from Megan in the new year.

Published: Practical guidelines for managing adults with 22q11.2 deletion syndrome.

In the past, medical guidelines for taking care of 22q11.2DS patients focussed mostly on children. As the children grow up to be adults, they often face different medical problems., Unfortunately, not a lot of guidance is available for doctors who take care of affected adults. Now, doctors from our clinic, along with some of our local and international collaborators, have compiled a set of Practical guidelines for managing adults with 22q11.2 deletion syndrome. The article is published in a scientific journal called Genetics in Medicine. The journal's website provides the abstract (for free) and complete article (for a fee).

In Memoriam: Dr. John Evans, 1929 - 2015

Dr. John Evans opened the Adult Congenital Heart Disease Clinic in 1959 and was the Director of this new Clinic until 1966. He was a champion and leader of excellence with visions and innovation, a man thinking of the big picture and figure, and a colleague with a balanced personality and great personal warmth. He will certainly be missed.

The Statement from the President of the University of Toronto, Meric Gertler, on the death of Dr. John Evans, President Emeritus of the University of Toronto, can be accessed here.

Now available: video of Megan's nutrition webinar

Our clinic's registered dietitian, Megan Morrison, recently presented a webinar called "Nutritional Health and its impact on Adults with 22q Deletion Syndrome" via 22q University. A video recording of this webinar (and a number of other webinars) can be viewed on the website of the Dempster Family Foundation.

Videos for health care providers

Health care providers can now watch videos on the website of the Dempster Family Foundation to become familiar with various aspects of 22q11.2DS. The topics include (1) medical and genetic overview, (2) neurocognitive academic, and social-behavioral characteristics, and (3) family perspectives.

22q at the Zoo (Toronto) - June 7th, 2015

22q at the Zoo for Toronto will take place on June 7th, 2015, at The Toronto Zoo. This event is co-hosted by the 22q Deletion Syndrome Clinic at the Hospital for Sick Children and The Dalglish Family Hearts and Minds Clinic for Adults with 22q11.2DS. More information to follow.

Please note: The international 22q at the Zoo event is taking place on a different day. The two clinics in Toronto feel that it's best to wait until June for warmer weather. See you on June 7th!

New pamphlets available

We have uploaded two new pamphlets onto the "Our Pamphlets" section of the clinic website. We have a leaflet that is an introduction to both 22q11.2DS and our clinic. It should be helpful to caregivers who need to explain the syndrome to others. We also have a more detailed pamphlet specifically written for health professionals. There are additional pamphlets on the site as well.

Recommended article: Schizophrenia: Genes Impact Treatment Response

Nancy Butcher, a Ph.D. student of Dr. Bassett, led a study that compared the responses to a medication in schizophrenia patients who have and do not have 22q11.2 deletions. An article in the latest edition of NRx (the monthly research newsletter of the University Health Network)describes the study. The original research report is published in the British Journal of Psychiatry, and an abstract is available on PubMed.

Another new pamphlet available

We have just published another new pamphlet through the Patient Education Department at the University Health Network. You can find the new pamphlet, "Could calcium and thyroid problems be related to a genetic condition?", as well as other relevant pamphlets on our pamphlets page.

Upcoming events

A Mother-Daughter Meet & Greet will take place on June 6th, which is the day right before 22q at the Zoo for Toronto. The registration deadline for Zoo day itself (June 7th) is May 20th.

Please also mark Saturday November 7th on your calendars for the 2nd Annual Family Conference.

Information for all these events is available on our events page.

i heart change

Our clinic invites you to visit the i heart change website. This is a website for young people with congenital heart disease. It contains a lot of information and videos on congenital heart defects, and is a great way to connect with other young people with similar conditions.

If you are graduating from a children's hospital and moving into adult care at the Toronto General Hospital, your new health care providers have a welcome message for you at https://www.youtube.com/watch?v=qKHLD5I6pXs. See you soon.

Peer Support Groups

Our clinic will be offering two simultaneous groups on Thursday June 11th, 2015, from 12 pm to 2 pm:

  • A group for parents and caregivers - an opportunity to talk to other parents about concerns, challenges, and successes. Our multi-disciplinary staff members will be in attendance.

  • A group for our adult patients - a chance for our patients to meet each other, participate in some fun exercises and to discuss topical subjects with staff facilitation.

Please note: Parents and caregivers can attend online from home. If you are interested, contact us for the weblink.

Lunch provided at 12 pm.

Please RSVP at (416) 340-5145 by June 7th.

We look forward to seeing you there.

A great website for resources: HCARDD

The website of Health Care Access Research and Developmental Disabilities (HCARDD) contains a resource section for patients, caregivers, health care providers, etc. Hope you can check out all the useful information there.

A collaborator's Movement Disorders Clinic at Toronto Western Hospital chosen for Fellowship

Dr. Anthony Lang, a neurologist at the Krembil Neuroscience Centre (KNC), works heavily with our clinic in the field of Parkinson’s disease and related movement disorders. He directs the Krembil Neuroscience Centre (KNC)’s Movement Disorders Clinic (MDC), which has been chosen by The Michael J. Fox Foundation for Parkinson’s Research (MJFF) as one of five academic centers in the world to host the inaugural class of the Edmond J. Safra Fellowship in Movement Disorders. Here are the original news article and the news on the UHN website.

Dr. Lang has also been ranked among the world’s most highly influential biomedical researchers by the European Journal of Clinical Investigation.

Enjoyed Zoo Day? The Family Conference is next!

Patients, families, and staff from both the 22q Clinic at SickKids and the Dalglish Clinic had a wonderful day at the Toronto Zoo on Sunday, June 7th. We look forward to the event again next year.

In the mean time, please mark Saturday, November 7th on your calendar. The 2nd Annual 22q11.2 Family Conference will take place at SickKids. More information will be posted in August.

McLaughlin Early Career Investigator Award for Dr. Erik Boot

Our Dalglish Fellow, Dr. Erik Boot, is a McLaughlin Early Career Investigator Award winner for the 2015 World Congress of Psychiatric Genetics in Toronto, Canada from October 16-20, 2015. More information to come.

Congratulations!

Available: Online Cardiac Exercise Program

The Peter Munk Cardiac Centre has launched a website, http://hcmfitness.ca/. It is an online exercise program that blends the best in cardiac medicine and the latest fitness practices. It was specifically designed for patients with an enlarged cardiac muscle (hypertrophic cardiomyopathy (HCM)) patients, but is suitable for anyone hoping to improve his or her fitness. Please check with your doctor to see if this program is suitable for you.

Dempster Family Foundation Closing

The Dempster Family Foundation has been a great organization that supports families affected by 22q11.2DS. Unfortunately, the Foundation has announced that it will be closing. Here is the letter from Ryan Dempster on October 15th.

Downloadable: Nutrition webinar for 22q11.2DS

Earlier this year, our former dietitian, Megan Morrison, gave a webinar called “Nutritional Health and its impact on Adults with 22q Deletion Syndrome” via 22q University, which is part of Dempster’s Family Foundation. As the Foundation is closing, our clinic is now providing the link to the webinar on our presentations page.

A successful family conference

The second annual 22q11 Family Conference was successfully held on Saturday, November 7th. The participants were enthusiastic, and the panel discussion was informative. Many thanks to the parents and speakers who made this event possible!

Explaining the diagnosis to someone who has 22q11.2DS

22q11NC (the North Carolina 22q11 Deletion Syndrome Support Group) has put together a book to explain what it is like to grow up with the syndrome. While it is geared towards younger people, it is a wonderful resource for explaining 22q11.2DS to an adult family member who has been diagnosed this syndrome.

The book is available online at http://www.22q11nc.org/book.

If you would like additional help in disclosing or explaining a diagnosis to a loved one, please call our clinic at (416) 340-5145 to arrange for an appointment.

Our clinic has a new name

Our clinic has changed its name to The Dalglish Family 22q Clinic. The services we provide remain the same.

Transition factsheets now available

As a young person grows from childhood into adulthood, there are many things to think about. Our 22q11.2 Deletion Syndrome Transition Series is designed to help with some of these discussions. The first three factsheets in our transition series are now available on our pamphlets page as well as on the website of the International 22q11.2 Foundation.

The topics currently available are:

  • alcohol
  • mental health
  • sexual health

Factsheets on additional topics are in production.

Zoo day - June 5th

Save the date! 22q at the Zoo for Toronto will take place on Sunday, June 5th, 2016. More information will be posted as it becomes available. Please note that the Toronto event is not taking place on the same day as the worldwide event.

Transitioning to adulthood: factsheets and videos

As a young person grows from childhood into adulthood, there are many things to think about. Our 22q11.2 Deletion Syndrome Transition Series is designed to help with some of these discussions. The first three factsheets in our transition series (as posted in early February) are on our pamphlets page as well as on the website of the International 22q11.2 Foundation. The website of the International 22q11.2 Foundation also contains Becoming an adult videos to help with the transition from adolescence to adulthood. Check them out.

Updated: "Our research" section

The Dalglish Family 22q Clinic is not just a place for clinical care. Our team members are actively involved in research related to 22q11.2DS. Now you can find out more about the research projects that are taking place at the Clinic. Check them out on Our Current Research page. You can also look at lists of our previous presentations and publications on Our Research page.

Daylight Saving Time starting this weekend

Spring is almost here, and so is Daylight Saving Time (DST).

Before you go to bed this Saturday, March 12th, please move your clock one hour forward . For example, at 8 pm on Saturday, change the clock to 9 pm.

If you are concerned about the adjustment, you can spread it out into chunks. For example, starting on Wednesday, go to sleep 15 minutes earlier each night. For more tips, please have a look at Daylight Saving Time 2015: How the time change affects your internal clock.

Census time!

A friendly reminder: If you received the 2016 Census form in the mail, please fill it out by May 10th. You can complete it in one of two ways:

  • Go online at www.census.gc.ca. Note, if the site does not load, it may have crashed due to the large number of people trying to access it. Please try again in an hour.

  • Call 1-855-699-2016 to request a paper questionnaire

If you need help, please call 1-855-700-2016.

Smoking is now prohibited on hospital grounds

The University Health Network recently announced that it has committed to become a smoke-free environment. In fact, at the beginning of 2016, new Ontario regulations (Smoke-Free Ontario Act and the Electronic Cigarettes Act) were established. It bans the smoking of both tobacco and electronic cigarettes on all hospital grounds (indoor, outdoor, as well as garages). The policy applies to employees, medical staff, volunteers, patients, visitors, learners and subcontractors.

Those who are caught smoking on UHN grounds are subject to fines from by-law officers. Individuals can be fined up to $5,000 and UHN can be fined up to $300,000.

If you are seeking support to quit smoking, there are resources available through UHN’s Outpatient Pharmacies, UHN Wellness, and through Community Partners (such as Toronto Public Health, Smoker’s Helpline, and CAMH).

Thank you for your cooperation.

Saying goodbye to two staff members

This month, we say goodbye to two of our staff members: our dietitian, Samantha Cooper, and Dalglish Fellow, Dr. Erik Boot.

Sam was our dietitian for the past year. She made learning about healthy eating really fun, and she posted fun food tips on the Clinic's facebook account. Unfortunately, her contract has just finished, and we send her our best wishes. Our former dietitian, Megan Morrison, has rejoined the team at the Dalglish Clinic.

Dr. Erik Boot was the Dalglish Fellow for the past two years. He brought his expertise and enthusiasm to our Clinic. Not only did he take great care of the patients, he also gave valuable input on medical forms and educational pamphlets and took the lead on significant research projects. He is well-loved by both staff and patients. Unfortunately, the fellowship is coming to an end, and he will be going back to The Netherlands. We wish him and his family all the best, and look forward to seeing him when he visits occasionally in the future.

Zoo day 2016

We had another successful 22q at the Zoo event on June 5th,2016. Even though it rained a little, we had a great day at the Toronto Zoo. Staff and patients from both the Sickkids 22q Clinic and the Dalglish Family 22q Clinic enjoyed one another's company. We visited the many baby animals at the Zoo too. Photos are now available in our 22q at the Zoo 2016 Gallery.

Welcome, Dr. Corral

We welcome Dr. Maria Corral to the Dalglish Clinic team. Dr. Corral is a Consultant Psychiatrist, and her biography is posted on Our Staff page.

Awards and Update for Dr. Erik Boot

Congratulations to Dr. Erik Boot, who recently received these awards:

  • From the University Health Network – Centre for Mental Health:

    • the 2015-2016 Fellow Research Award
    • the 2015-2016 Fellowship Travel Award
  • From the the Department of Psychiatry at the University of Toronto:

    • the 2015-2016 Max Alexandroff Award

As his fellowship comes to an end, he is returning to the Netherlands this week. Our Clinic staff members will certainly miss him, but we will continue to work together.

CTV News segment on 22q

CTV News had a segment on 22q on Friday, July 15th, 2016. Our Clinic Director, Dr. Bassett was interviewed. Both the Dalglish Family 22q Clinic and the Toronto General Hospital were mentioned.

Here is the video (you may see a short advertisement before the actual segment on 22q).

Review article: CNVs in CHD

Congratulations to Dr. Bassett and team for publishing a review article on the role of copy number variations (CNVs) in congenital heart disease (CHD). You can find this article on our Recent Publications page.

November 22 - 22q Awareness Day

Did you know that November is 22q Awareness Month, and November 22nd is 22q Awareness Day? Let's take this opportunity to spread the news about 22q! To find out how to take part in awareness campaigns, please visit our 22q Awareness Day page.

Reminder: Upcoming events in Toronto

Just a very friendly reminder about two upcoming events in Toronto:

  1. Our Clinic's next Peer Support Group Meeting will take place on November 10th. Please see our Events Page for more information. Hope to see you there!

  2. The Third Annual 22q11.2DS Family Conference will take place on November 12th and 13th at the Hospital of Sick Children. For more information or to register, please visit the conference website. The registration is done online through EventBrite.

UHN Says Goodbye to Hospital Cards

The University Health Network (UHN, which includes the Toronto General Hospital) is eliminating the use of hospital cards starting on November 28th, 2016. Patients will only need their Ontario Health Insurance Plan (OHIP) cards, or another form of government-issued photo identification, such as passports or a driver’s license, as identification for registration.

For more information, please see the news article on UHN‘s website.

A Successful Family Conference

The 3rd Annual 22q11.2 Family Conference was held on November 12th & 13th at the Hospital for Sick Children. The keynote speaker, Quinn Bradlee, discussed his life with 22q. Amy Baskin held a workshop on parent care. She ensured parents that they are the best they can be for their children when they take care of themselves first. Various medical professionals and social workers who routinely work with patients with 22q11.2DS also provided great strategies and suggestions on how parents can address various areas of this syndrome.

There were 97 parents/grandparents or caregivers, 29 teens, and 29 kids who participated in the weekend. The families left with some new tools and strategies to use at home, additional information on the syndrome and most left with new friends that they can reach out to when they want some advice or just someone to listen. The 2017 Family Conference has been scheduled for November 11th-12th, 2017. Please watch for further details to become available.

Family Conference Logo

Welcome and Welcome Back!

We welcome Ania Fiksinski, a psychologist from the Netherlands. She will be responsible for neurocognitive and related assessments of our patients and their families. She is currently pursuing a PhD, and was the recipient of the Junior Investigator Award at the 22q11.2DS Biennial Meeting this past July.

We also welcome back Samantha D'Arcy as our registered dietitian. She will help patients and their families to create suitable nutrition plans and provide patient and caregiver education.

Holiday Closure

During the holiday season, our Clinic will be closed on December 26th (Monday) and 27th (Tuesday) as well as January 2nd (Monday).

We take this opportunity to provide you with information for a fire safe holiday.

Happy holidays!

Zoo Day 2017

Save the date! 22q at the Zoo for Toronto will take place on Sunday, June 11th, 2017. More information will be posted as it becomes available. Please note that the Toronto event is not taking place on the same day as the worldwide event.

Bell's Let's Talk Day 2017

January 25th, 2017 is Bell's Let's Talk Day. This is an initiative to fight stigma surrounding mental illness and raise funds for mental health in Canada. We are all invited to fight the stigma and start the conversation by:

  • using appropriate language;
  • educating ourselves;
  • being kind;
  • listening; and
  • talking about mental health conditions.

Every time you talk, text and join in on social media on January 25th, Bell will donate 5¢ more to mental health initiatives.

For more information, please visit:

Green Tea Extracts May Damage the Liver

Some people have been taking green tea extracts to lose weight. However, there is no proof that these supplements can help with weight loss. In addition, CBC’s Marketplace found over 60 cases where liver failures happened in people who took green tea supplements.

Please read CBC’s article Hope in a bottle': Why diet supplements billed as natural may not always be safe. You can also watch the Marketplace episode How Not to Lose Weight online.

We urge you to talk to your doctor before you take any natural or nutritional supplements. Whenever you have an appointment at the Dalglish Clinic, please bring all your medications, including natural or nutritional supplements. Thank you.

New Website Section: Natural Health Products

Using natural health products is a common practice. However, just because a product is "natural" does not mean it is safe. Please visit our new section on Natural Health Products.

We urge you to talk to your doctor before you take any natural or nutritional supplements. Whenever you have an appointment at the Dalglish Clinic, please bring all your medications, including natural or nutritional supplements. Thank you.

A Hospital Handbook Compiled by Patients

If you have ever felt that going to the hospital feels like going to a foreign country, this handbook is for you. A group of seniors in Kingston, Ontario, has come together to share common hospital experiences, frustrations, and workarounds. With the help of University Health Network’s OpenLab group, their contribution was compiled into a free handbook called From Patients Who Know: A Hospital Handbook. It has a lot of useful information and was mentioned by the Toronto Star.

Some of the topics covered include:

- What to bring
- Getting to the Emergency Department
- The Language of Hospitals
- People You’ll Meet

Please download it for free and have a look.

Genetic Non-discrimination Act PASSED 3rd reading in the House of Commons

On March 8th, 2017, Bill S-201, the Genetic Non-discrimination Act PASSED 3rd reading in the House of Commons. It still has to pass through the Senate, which it likely will.

This legislation makes it a criminal act to discriminate against a person based on their genetic test information. The Canadian Labour Code and the Canadian Human Rights Act were also amended to protect individuals from such discrimination. Canadians are now closer to being able to undergo genetic tests without fear that the results will be used against them.

For more information, please read the coverage by the National Post and the CBC.

If you have any questions or concerns about genetic testing, please speak with your medical provider.

Mel Silverman Mentorship Award

Our Clinic Director, Dr. Anne Bassett, has been selected to receive the 2017 Institute of Medical Science Mel Silverman Mentorship Award. Please visit our Awards page for details.

Congratulations, Dr. Bassett!

Radio Interview: Tune in tonight!

From the website of the International 22q Foundation:

Shai Ben-Yaacov, a 22q dad and producer of the nightly public radio show NewsWorks Tonight in Philadelphia, will be on the air tonight talking about learning of his son's heart condition and subsequent 22q diagnosis. His son has Tetralogy of Fallot, the same condition Jimmy Kimmel just made famous in a widely shared clip about his newborn son.

You can hear Shai live between 6:00 and 6:30 PM ET Thursday (5/4). If you're in the Philadelphia area, you can listen at 90.9 FM, or if not, you can stream the show at newsworks.org or whyy.org. If you don't catch it live, you can find the segment afterward at newsworks.org.

Toronto Zoo temporarily closed due to strike

Unionized employees at the Toronto Zoo are now on strike, and the Zoo will be closed to the public until further notice. If the Toronto Zoo is still closed on June 11th, there will be a full refund. We do not pay until we gain entry to the zoo.

Our Zoo Day page

Zoo Day Cancelled

Dear families and colleagues,

We are very sorry to inform you that due to an ongoing strike by CUPE Union 1600, the Toronto Zoo is no longer able to hold our 22q at the Zoo event. Because this occurred so late in the game, we have been unable to secure an alternative venue that is sheltered, family-safe and crowd-friendly. Rest assured, we do plan on holding this event next year again and will reach out to you all with details when they become available. For people who have already registered, you will receive a FULL refund. However, we ask for your patience in processing this.

Fortunately, the 4th Annual 22q11DS Family Conference will be another opportunity to come together. So please mark your calendars for November 11th and 12th 2017, and join us for an educational, supportive and fun weekend!

Please visit http://22qfamilies.org/ to learn more about this wonderful opportunity to meet families and professionals and to all learn together!

Regards,

The 22q Deletion Syndrome Clinic at the Hospital for Sick Children
and
The Dalglish Family 22q Clinic at Toronto General Hospital

New in Ontario: Screening for Critical Congenital Heart Disease

Congenital heart defects are common among individuals with 22q11.2 deletion syndrome (22q) and are also present in people who do not have the deletion. In some critical cases, the babies' hearts have not formed properly, and this can lead to severe health problems or even death. To complicate the matter, some babies appear normal at first, and their heart defects may not be recognized until their health has seriously deteriorated. When that happens, the babies may need more complex surgeries, and their chances of survival may decrease.

A newborn heart screening program has started, and it will be available to all babies born in Ontario by January 2018. It can identify newborn babies with critical congenital heart disease earlier so that they can be treated sooner and have better outcome. Between 24 to 48 hours of being born, all babies in Ontario will receive a "pulse oximetry" test. This test is painless and only takes about 5 minutes. The nurse or midwife will shine a special light through the baby's hand and toe to measure the amount of oxygen at each location. The results will be available within minutes. If there is a difference between the top limb and bottom limb, the doctors can diagnose a heart defect. This simple, non-invasive procedure can provide early detection of critical congenital heart diseases for 50 to 100 babies (with or without 22q) each year.

It is important to note that this newborn screening program for critical congenital heart diseases is only an interim measure before we have the 22q newborn screening. It would miss all those of babies with 22q who have no major detectable heart defect. In order to be sure that we can detect the 22q11.2 deletion in all babies who have it, we need true molecular newborn screening. Multiple 22q healthcare providers continue to discuss this possibility with policy makers. We look forward to the day when 22q become part of standard newborn screening programs so that everyone with 22q can receive timely and suitable medical care.

If you have any concerns about this topic, please call the Dalglish Clinic at (416) 340-5145 to make an appointment with one of our physicians.

Thank you.

Sources:

Now Open: Family Conference Registration

Registration is now open for the 4th Annual 22q11.2 Family Conference!

The conference will take place on November 11th and 12th, 2017 at the Hospital for Sick Children.

The theme this year is Social Skills for Life.

Rick Lavoie, the author of "It's So Much Work to Be Your Friend", will be the keynote speaker.

Please see our clinic's events page or the Family Conference website for more information.

Deadline for pre-ordering lunches: October 25th
Deadline for registration: November 8th

Hope to see you there!

New Revelations in Parkinson's Disease

We published our research on the clinical features of 22q patients at risk of developing Parkinson's Disease back in March. This research was highlighted today on UHN Research News.

Congratulations to Nancy Butcher and co-authors for the publications. Please check out these articles.

Abstract of the original article on NCBI

UHN Research News

Clinic research highlights

Reference: Butcher NJ, Marras C, Pondal M, Rusjan P, Boot E, Christopher L, Repetto GM, Fritsch R, Chow EW, Masellis M, Strafella AP, Lang AE, Bassett AS. Brain (2017) Mar 24. (doi: 10.1093/brain/awx053)

Toronto welcomes Dr. Jacob Vorstman

Jacob Vorstman, a child psychiatrist from Utrecht, the Netherlands will be joining the Department of Psychiatry at the Hospital for Sick Children in Toronto. As an Associate Professor, he will be doing both clinical work and research, starting in September. Dr. Vorstman has been a long-time research collaborator with Dr. Anne Bassett, our Clinic Director, and they co-supervise our graduate student Ania Fiksinski. He has also worked closely with our fellow Dr. Elemi Breetvelt and will certainly continue to do so.

Dr. Vorstman studied medicine in Amsterdam, the Netherlands. For his PhD, he studied the molecular genetic and cognitive-behavioral aspects of 22q11.2 deletion syndrome (22q). He was certified as a psychiatrist in Utrecht in 2008 and has conducted research with Dr. Beverly Emanuel in Philadelphia. For more information on his earlier work, please visit the website of the 22q11.2 Society.

Dr. Vorstman’s current 22q research work is similar to some of Dr. Bassett’s except it is on children instead of adults. With his team he monitors the children and collects research data on autism spectrum disorder, attention deficit hyperactive disorder (ADHD), and anxiety issues. He also follows the cognitive development of these children as they mature into adulthood. He aims to find out if and to what extent some of these problems may be the first signs of schizophrenia. One question he is asking is: If a person can differentiate his true ability as opposed to unrealistic expectations of him, will that help prevent psychiatric complications?

Leaving two jobs behind and moving to Toronto with his wife and four children has been a little stressful. Nevertheless, Dr. Vorstman has found Torotonians to be very kind, outgoing, and willing to help, something that he appreciates very much. Fortunately, he and his family have not had language issues, but he finds that people talk a little too fast over the phone. On the other hand, he has been amazed at the number of languages that people in Toronto speak, and his wife (a linguist who will be working in OISE) is certainly delighted about the variety.

Since his arrival in Toronto on July 28, Dr. Vorstman has been trying to get all the necessary documents, home furniture, as well as internet connections. He plans to bike downtown to work (“The biking situation here is better than in Philly”) and he plans to let his children resume their music activities once the family settles down. When asked about the weather, he finds the heat to be “bearable”, and he has been given plenty of warning about the winter. For now, he just has to get used to the number of choices he needs to make when buying a coffee: “Three different sizes, fourteen types of milk, for here or to go!”

Welcome, Dr. Vorstman. We look forward to working with you.

22q11.2 Family Conference: Register Now

The 4th Annual 22q11.2 Family Conference is only one month away!

The Conference will take place on November 11th and 12th, 2017 at the Hospital for Sick Children.

You can view the program and register online on http://22qfamilies.org/.

Deadline for pre-ordering lunches: October 25th
Deadline for registration: November 8th

Hope to see you there!

Time to get your flu shot

Autumn is here, and it is time to get the flu shot. This year, experts are expecting a nasty flu season (Listen to the interview on CBC.ca. This audio file works best on Chrome).

You can receive your flu shot at your family doctor's office or at pharmacies, including:

TORONTO GENERAL HOSPITAL

  • TGH Outpatient Pharmacy, 1-NUW: 9:00AM to 5:00PM
  • Transplant Outpatient Pharmacy, 12-PMB: 8:30AM to 3:30PM

The flu shot is free. No appointments are necessary. Please bring your OHIP card.

The flu is caused by viruses that change and adapt quickly. A flu vaccine made last year will not offer enough protection against the viruses that may make you sick this year. You should get a flu shot every year so your immune system can protect you from the newest variety of flu viruses.

The flu vaccine in the needle-form is NOT a live attenuated vaccine. Only the intranasal flu vaccine (the "flu mist") is live. Please discuss with your doctor to see if the mist form is suitable for you.

Holiday Closure

During the 2017-18 holiday season, our Clinic will be closed from December 25th (Monday) to January 1st (Monday).

Happy holidays!

A note about donations

If you would like to make a donation to the Dalglish Family 22q Clinic, please visit our Donate page for more information.

If you wish to make the donation by cheque, please remember to:

  • make the cheque payable to Toronto General & Western Hospital Foundation; and

  • write Dalglish Family 22q Clinic in the memo field.

For more information, please contact Brent Link: (416) 340-4800 ext. 3075 or brent.link@uhn.ca.

Thank you very much for your support.

Registration open for Whistler 2018!

Registration is now open for the 11th Biennial International 22q11.2 Conference, which will take place in Whistler, BC, Canada in July 2018. More information is available on the Whistler 2018 page of the International 22q11.2 Society.

Discounts on registration fees are available only until March 15th, 2018. Please register as soon as possible to take advantage of this great deal!

Early bird deadline for the Family Meeting of The 11th Biennial International 22q11.2 Conference

The Family Meeting portion of The 11th Biennial International 22q11.2 Conference will take place from July 14th to 16th, 2018 in Whistler, BC, Canada. This is a great opportunity to learn more about 22q11.2DS from international experts. Check out the program for the many topics covered!

The early registration deadline is May 1st, 2018. Please register as soon as possible to take advantage of the discount. More information is available on the registration site.

Zoo Day and two conferences!

Three exciting events are happening from June to November. We hope you can join us.

22q at the Zoo
On Sunday June 10th, 2018, the SickKids 22q11 Deletion Syndrome Clinic and the Dalglish Family 22q Clinic will be hosting our 7th Annual 22q at the Zoo International Awareness Day at the Toronto Zoo. This is a great opportunity for patients of all ages and their families to network and enjoy a day with other families and clinic staff at the Toronto Zoo.

Please register soon! The registration deadline is Thursday May 31st, 2018.

International Conference - Families
Registration is now open for The 11th Biennial 22q11.2DS Society International Conference in Whistler BC! The Family Meeting takes place from July 14th to 16th. Meet professionals and families from all over the world at the largest combined scientific and family conference devoted to 22q11.2 Deletion Syndrome.

Please register soon to avoid late fees.

SickKids Family Conference
SAVE THE DATE! The 5th Annual 22q11.2 SickKids Family Conference will take place on November 3rd and 4th, 2018 in Toronto. This year’s event will focus on EDUCATION and we are excited to share that Donna Cutler Landsman will be joining us as our key-note speaker on Saturday, November 3rd.

More information will be posted on www.22qfamilies.org as it becomes available. Feel free to contact the organizers with any questions. You can also ask to be added to their mailing list.

"Crisis of Care" Town Hall for CBC Radio show "White Coat, Black Art"

A week from today, on Tuesday, June 12 at 7 p.m., the CBC Radio show White Coat, Black Art, hosted by Dr. Brian Goldman, will be taping a Town Hall of their weekly medical show in the Bell Gateway Gym, 100 Stokes Street, Toronto.

The special edition show, titled “Crisis of Care“, will be devoted to the subject of people with developmental disabilities aging out of the youth healthcare system at the age of 21.

Among the panelists discussing the stresses and unique challenges aging out of the youth system places on these young adults and their caregivers will be Dr. Yona Lunsky, Director of the Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health.

If you or someone you know is interested in attending and taking part in the Town Hall, you can order tickets, which are free of charge.

We hope you can join in for what promises to be an important and lively conversation.

Dr. Breetvelt receives the Fellow Research Award

Congratulations to our clinical research fellow, Dr. Elemi Breetvelt, who received the 2017-2018 Fellow Research Award from the University Health Network - Centre for Mental Health. A photo from the award ceremony is available on Our Awards page.

11th Biennial International 22q11.2 Conference Completed

The 11th Biennial International 22q11.2 Conference in Whistler, Canada, has come to a conclusion. 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. We also presented our research projects.

Photos 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):

Whistler 2018 Toronto Group

Back row (L to R):

  • Prof. Christian Marshall, Geneticist
  • Dr. Erik Boot, Research Associate and Former Dalglish Fellow
  • Dr. Jacob Vorstman, Child Psychiatrist
  • Dr. Elemi Breetvelt, Mr. Rajeeb Mukherjee BSc (Hons) (London School of Economics) Fellow in Schizophrenia
  • Spencer Van Mil, Medical Student
  • Dr. 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
  • Dr. Lily Van, Psychiatry Resident
  • Ania Fiksinski, Graduate Student
  • Dr. Anne Bassett, Psychiatrist and Director of the Dalglish Family 22q Clinic

Front row (L to R):

  • Tracy Heung, Research Analyst
  • Dr. Eva Chow, Psychiatrist

Tracy Heung receives the Junior Investigator Award

Our research analyst, Tracy Heung, was one of two recipients of the Junior Investigator Award for the most outstanding presentation by a junior faculty member at The 11th Biennial International 22q11.2 Conference in Whistler, BC, in July, 2018. Tracy's presentation was titled "Predictors of All-Cause Mortality in Adults with 22q11.2DS". Our graduate student, Ania Fiksinski, received the same award in 2016. She presented the award to Tracy this year.

For more information about the award and its recipients, please visit the website of the International 22q11.2 Society.

Congratulations, Tracy!

Tracy Heung, Ania Fiksinski, and Lisanne Vervoort

From Left: Tracy Heung, Ania Fiksinski, and Lisanne Vervoort in Whistler in July, 2018

Registration now OPEN for 22q Family Conference at SickKids

Registration is now OPEN for the 5th Annual 22q11.2 SickKids Family Conference, which will take place on November 3rd, 2018 in Toronto. This year’s event will focus on EDUCATION and we are excited to share that Donna Cutler Landsman will be joining us as our key-note speaker.

To find out more and to register, please visit www.22qfamilies.org.

Feel free to contact the organizers at connect22qfamilies@rogers.com with any questions. You can also ask be added to their mailing list.

The poster below is also available as a pdf file.

registration open poster

Time to get a flu shot

You need to get a flu shot every year, and October or early November is a great time to get one!

You can get your for FREE flu shot at the following locations:

Toronto General Hospital - Outpatient Pharmacy
  • 1st Floor, Norman Urquhart Wing
  • Monday to Friday 9 AM to 5 PM
  • Saturday 9 AM to 2 PM
  • A valid OHIP card is required.
  • No appointment necessary.

Toronto General Hospital - Transplant Outpatient Pharmacy

  • 12th Floor, Peter Munk Building
  • Monday to Friday 8:30AM to 4:30PM
  • Saturday 9 AM to 2 PM
  • A valid OHIP card is required.
  • No appointment necessary.

Toronto Western Hospital - Shoppers Drug Mart

  • Main Atrium
  • Monday to Friday 9:30AM to 5:30PM
  • Saturday and Sunday 9 AM to 5 PM
  • A valid OHIP card is required.
  • No appointment necessary.
Free flu shot clinics in Toronto
Other locations
  • Your family doctor's office

  • Many pharmacies

  • Public health units

  • Walk-in medical clinics

Dr. Anthony E. Lang received the 2018 Weston Brain Institute International Outstanding Achievement Award

Dr. Anthony Lang, a wonderful colleague who takes care of many patients with 22q, received the Weston Brain Institute International Outstanding Achievement Award on October 30th, 2018.

Dr. Lang is the Director of the Edmond J. Safra program in Parkinson’s Disease at the University Health Network and Professor of Medicine at the University of Toronto. He is considered the world leader in movement disorders such as Parkinson’s disease (PD) and progressive supranuclear palsy (PSP), and has published more than 700 articles in the area. He is a founding member of the Parkinson Study group, the largest worldwide network of PD clinicians focused on clinical trials for Parkinson’s treatments.

The Weston Brain Institute International Outstanding Achievement Award recognizes an exceptional researcher who has made significant advances in accelerating the development of therapeutics for neurodegenerative diseases of aging through translational research, has demonstrated remarkable leadership, and has a record of impeccable citizenship in the research community. The 2018 prize of $40,000 was provided by The W. Garfield Weston Foundation, and was open to researchers based in Canada.

Congratulations, Dr. Lang!

Dr. Anthony Lang received the 2018 Western Brain Institute International Outstanding Achievement Award

Special issue on 22q11.2 in the American Journal of Medical Genetics

Just in time for 22q Awareness month, The American Journal of Medical Genetics published a special issue on 22q11.2 on October 31st, 2018. Here is the wonderful collection of articles.

The Dalglish Family 22q Clinic team members were involved in the following studies:
Our international colleagues published the following studies:

Postal strike ended but delays in mail deliveries expected

The rotating strikes by Canada Post employees have come to an end, but there may still be delays in mail delivery.

Our Clinic staff continues to mail out non-urgent items at this time. If you have any concerns, please call us.

Phone: (416) 340‒5145

Fax: (416) 340‒5004

Email: 22q@uhn.ca

A note of caution about sending emails to the Dalglish Clinic:

Please use email for administrative issues only. If you have any medical or clinical concerns, please talk to clinic staff members in person.

Email is not a secure method of communication. If you wish to send sensitive information (including, but not limited to, information about your health), please use the telephone or fax machine.

The Dalglish Clinic cannot be held responsible if information is lost or stolen when you send emails to us.

Thank you for your understanding.

Have you received your flu vaccination in 2018?

You need to get vaccinated against the flu every year. If you would like to learn more about the flu and flu vaccines, please watch this video from BBC. The British term “jab” is the same as the Canadian term “shot”.

You can get your for FREE flu shot at the following locations:

Toronto General Hospital – Outpatient Pharmacy

- 1st Floor, Norman Urquhart Wing

- Monday to Friday 9 AM to 5 PM
- Saturday 9 AM to 2 PM
- A valid OHIP card is required.
- No appointment necessary.

Toronto General Hospital – Transplant Outpatient Pharmacy

- 12th Floor, Peter Munk Building

- Monday to Friday 8:30AM to 4:30PM
- Saturday 9 AM to 2 PM
- A valid OHIP card is required.
- No appointment necessary.

Toronto Western Hospital – Shoppers Drug Mart

- Main Atrium

- Monday to Friday 9:30AM to 5:30PM
- Saturday and Sunday 9 AM to 5 PM
- A valid OHIP card is required.
- No appointment necessary.

Free flu shot clinics in Toronto

- Locations and dates
- OHIP card is not required.
- Make an appointment at tphbookings.ca to avoid lineups.

Other locations

- Your family doctor’s office

- Many pharmacies

- Public health units

- Walk-in medical clinics

2019 “Faces of 22q” calendar

The 2019 “Faces of 22q” calendar is now available for pre-order from the International 22q11.2 Foundation.

This calendar makes a lovely holiday gift to those who help individuals with 22q along this journey. By purchasing a calendar today, you will help raise much needed awareness for the 22q11.2 deletion and duplication syndromes. All proceeds benefit The International 22q11.2 Foundation, Inc.

Calendars will begin to ship out the week of December 10th.

Thank you for your support!

Internet safety reminder

As we shop on the Internet and send each other electronic greetings, here is a special holiday reminder on Internet safety, provided by UHN Digital:

1. Watch out for suspicious emails or messages

More email scammers tend to appear during the holidays, luring shoppers with fake special deals and tricking them into revealing personal information. Don’t open an email from a person you don’t know or a site you haven’t visited before.

2. Be suspicious of emails that seem to come from people you know asking you to do something unexpected

Phishing campaigns often pretend to be coming from a trusted friend or colleague and rely on you not checking the actual email address of the sender. In some cases, the cyber-attacker uses the internet to research their intended victim and people their victim interacts with, like your manager, CEO or co-worker. The cyber attacker then crafts an email pretending to be one of these people and sends it to you. When in doubt, check with your friend or colleague via alternate methods.

3. Look out for messages designed to make you panic

A message may claim that your account has been compromised and the only way to verify it is to enter your login details. Alternatively, an email might state that your account will be closed if you do not act immediately. Ensure that you take the time to really think about whether an email is asking something reasonable of you. If you’re unsure, contact the company through other methods.

4. Look out for website and email addresses that do not look legitimate
It is often the case that a phishing email will come from an address that appears to be genuine, with the aim of trying to trick recipients by including the name of a legitimate company within the structure of email or website addresses. If you only glance at these details they can look very real, but if you closely examine the address you may find that it’s a bogus variation intended to appear authentic ‒ for example: mail.amazon.work as opposed to amazon.ca

5. Pay attention when looking at links and URLs

Hovering over links in webpages and emails, as well as taking that extra time to look at the browser address bar and see what website you’re really at can save you from falling for a phishing attack.

6. Look out for fake purchase invoices, shipping status messages and email deals

Attackers take advantage of this by sending fake purchase receipts or shipping status messages, sometimes purportedly from reputable companies like Apple, Walmart and Amazon etc. Victims could find themselves installing malware or landing on a phishing page by clicking these links or by downloading attachments.

7. Update your personal computer’s protection software

You should install operating system, application patches and anti-virus applications on your personal devices as soon as they are available. Cyber security threats are constantly developing and installing the latest software updates can protect you from any new attacks.

8. Don’t use public Wi-Fi to shop online

Public networks are not secured and likely will not encrypt your data. A hacker connected to the same network could capture your identity – whether you’re connected through your computer or phone. Although you may want to shop quickly to take advantage of a deal, you should wait until you are home or connected with a protected Internet connection.

9. Only shop on secure sites

Before providing any online vendor with your information, check if the page URL has “https” at the beginning of the site address. All legitimate shopping sites will have this for your protection. If you don’t see the full five letters, that means the site and any data you share will not be encrypted or secure.

10. Steer clear of phony shopping and discount apps

Only download shopping apps from reliable sources, such as the Apple Store or Google Play. Check the name of the developer, read the online reviews and pay attention to what permissions the app asks for. If something seems off and the app is asking for access to your all contacts, it may be a phony.

11. Keep an eye on your bank accounts.

Make sure the purchases shown there were actually made by you. If you notice any suspicious or unidentified transactions report it to your financial institution.

12. Most importantly, trust your gut

You probably wouldn’t shop at a store you don’t recognize or simply doesn’t seem legitimate. That same gut feeling should apply when shopping online. If anything seems strange or you feel you are giving out too much information, cancel the transaction or immediately leave the site. Your personal and financial information is not worth the risk.

What is the difference between a cold and the flu?

In general, the common cold is milder than the flu, and the flu is the one that can lead to serious health issues. Please visit the Center for Disease Control and Prevention's website on Cold versus Flu to learn more about the symptoms of each of them.

It is important for individuals to receive flu vaccination every year. For more information, please visit our vaccination page.

Published: 2018 Clinic Newsletter

The Dalglish Family 22q Clinic's 2018 Newsletter has been published! Here is the pdf version. This newsletter contains interviews with Dr. Miriam Reuter and Ania Fiksinski. We also share exciting research news and conference experiences. Please enjoy.

To see our previous newsletters, please go to our newsletter page.

If you have any comments or suggestions, please let us know via email (22q@uhn.ca) or phone (416) 340-5145. Thank you.

Caution about the use of Cannabis

On October 17th, 2018, using cannabis (“marijuana” or “weed”), was legalized in Canada. However, we advise our patients not to smoke weed.

Please visit our new webpage on Recreational Drugs for more information.

If you have questions about the safety of using marijuana in your own case, please contact our Clinic at 416-340-5145 to
make an appointment with one of our doctors.

Dr. Erik Boot received the SSBP Travel Grant Award

Congratulations to our research associate and former Dalglish Fellow, Dr. Erik Boot, who received a Travel Grant Award from the Society for the Study of Behavioural Phenotypes (SSBP) in December 2018.

Dr. Boot will be using the grant to travel from the Netherlands to Toronto in 2019 to follow up with the patients in his study: "Moving beyond Parkinson’s disease in 22q11.2 deletion syndrome: a study on movement disorders in adults".

We look forward to seeing Dr. Boot again in the Clinic!

Now available: "22q Through My Eyes" book

Congratulations to Jordan Nanos for successfully writing and publishing the book 22q Through My Eyes!

Jordan was an 18-year-old patient at the Hospital for Sick Children in Toronto when he started writing the book. It took him two and a half years to do it, and the book was edited by Andrea Shugar and Stephanie Ngo. Jordan and Stephanie recently received the 22q CARE Award from the Division of Clinical and Metabolic Genetics at SickKids.

In this inspiring book, Jordan Nanos, a young adult with 22q11 deletion syndrome shares with us his personal journey growing up with 22q. He talks openly about some of the challenges he has experienced with respect to social skills, bullying, learning, mental health, transitioning to adulthood and keeping safe. Jordan discusses some of the strategies he has used to help cope with these challenges. He encourages others to focus on their strengths and accept themselves for who they are, reminding us that we all have the ability to find happiness within ourselves.

The target audience of 22q Through My Eyes are teenagers and young adults with 22q11.2DS. You can purchase it for $20 directly from the Genetic Counsellors of Ontario, which is the publisher of the book. All proceeds from sales of this book will be donated to the SickKids Foundation 22q Family Fund. Thank you for your support!

"22q Through My Eyes" Flyer (pdf)

22q Through My Eyes image

Jordan and Stephanie received the 22q CARE Award on Zoo Day 2018.
CARE award 2018

22q at the Zoo - Save the date!

The Toronto event of 22q at the Zoo will take place on Sunday, May 26th, 2019. Please save the date!

More information will be posted on our events page. Please stay tuned.

Canada's Food Guide 2019

Canada has a new food guide!

The guide advises Canadians to:

  • Eat plenty of vegetables and fruits
  • Choose whole grain foods
  • Eat protein foods
  • Make water your drink of choice

For more information, please visit the official food guide website.

Food guide 2019

New graphic booklet helps you learn about privacy on the Internet

Many of us use the Internet but may not be aware of the privacy issues associated with it.

The Office of the Privacy Commissioner of Canada has created a 12-page graphic novel, Social Smarts: Privacy, the Internet and You, to help Canadians to better understand and deal with privacy issues in the online world. It is easy to read and you can download it for free.

For more information, please also visit:

Register now for 22q at the Zoo!

22q at the Toronto Zoo will take place on May 26th, 2019 (Sunday).

Please register online before May 17th, 2019.

For more information and to register, please visit our event page.

Hope to see you there!

Check with our dietitian before you start a diet

Some diets claim to help people lose weight and fight diseases, but many have dangerous side effects.

Please check with our dietitian before starting any diets. You can book an appointment by calling our Clinic at (416) 340-5145. Thank you.

Staff members' long service recognized in UHN ceremony

Lisa Palmer and Joanne Loo were recognized for 5 years of service at UHN on May 8th, 2019. Lisa is the Social Worker and Joanne is the Patient and Family Education Tool Developer and Website Manager at the Dalglish Family 22q Clinic.

Congratulations!

Joanne and Lisa's 5 year recognition

A great day for 22q at the Zoo!

Staff and patients from both the 22q Deletion Syndrome Clinic at SickKids Hospital and the Dalglish Family 22q Clinic had a great day at the 22q at the Zoo event on May 26th, 2019 (Sunday). The weather was perfect, and we enjoyed spending time with one another. We even had a visit from the zookeeper, who brought along an eastern fox snake called "Michael J. Fox"!

We thank Cheryl Cytrynbaum from the 22q Clinic at Sick Kids for organizing the 2019 event for Toronto. We also thank the staff from both clinics as well as the volunteers for helping out.

Every year, at the 22q at the Zoo event, the 22q C.A.R.E. Award is presented. It honours an individual’s dedication and commitment to raising Community Awareness, Resources and Empathy for 22q11.2 deletion syndrome. The 2019 recipient is Simina Bogatan, a student in the M.Sc. Genetic Counselling Program at the University of Toronto. Simina developed an interactive educational module that helps parents overcome potential challenges in speaking with their child (aged 9 to 12) about the diagnosis of 22q11.2 deletion syndrome. Congratulations, Simina!

Please enjoy these photos.

Zoo Day 2019

Zoo Animals

Beware of ticks

Ticks are most active in spring and summer. If you are bitten by an infected blacklegged tick, you may get lyme disease--a potentially serious infection. Please note, however, not all blacklegged ticks carry the bacteria that causes Lyme disease, and not everyone who is bitten by an infected tick will develop signs and symptoms of Lyme disease.

To avoid getting bitten, please cover your skin (e.g. wear long-sleeved shirts) and use insect repellent containing DEET.

For more information, please visit the Ontario Government's lyme disease page.

If you have any concerns, please check with your health care provider.

Lisanne Vervoort receives ESHG's Young Investigator Award

Congratulations, Lisanne!

Lisanne Vervoort received the European Society of Human Genetics (ESHG) Young Investigator Award for the paper entitled Optical mapping of 22q11.2 low copy repeats reveals structural hypervariability. The Dalglish Clinic team is collaborating on this very important piece of research into the structure of the chromosome 22q11.2 region, and the results may help medical researchers understand the differences that exist among individuals with the syndrome.

More information about Lisanne Vervoort and the ESHG Young Investigator Award

Authors and Abstract

Photos

What to bring when coming to the Dalglish Clinic

Have you ever wondered what you need to bring when you come to the Dalglish Family 22q Clinic for an appointment? Here is a check list to help. For a printable (pdf) file of the image below, please click on the image itself.

If you have any questions, please call us at (416) 340-5145 or email us at 22q@uhn.ca.

Please bring these things when you come to the Dalglish Clinic

Questions about vaccines?

Do you have questions about vaccines?

Ask your doctor – not the Internet!

The Ontario Medical Association is running a digital campaign to counter vaccination myths.

Vaccines are safe - they protect you and your loved ones!

Here at the Dalglish Family 22q Clinic, our doctors are happy to answer your questions about vaccines. Please talk to us if you have any concerns. Thank you.

Stay positive!

Everyone has good days and bad days.

A young man with 22q created a Facebook page in 2017 to stay positive, and his page has received over 700 Likes in two years.

Visit Positivity with 22q11.2DS to get some great inspiration!

Time to get your flu shot!

It's time to get your flu shot!

If you have an appointment at our Clinic, you can get your flu shot at the Toronto General Hospital:

Toronto General Hospital Outpatient Pharmacy
(First floor, Norman Urquhart Wing)
Monday to Friday: 9 AM to 5 PM

Flu shots are free of charge.
No appointments are needed.
Please bring your OHIP card.

Other locations for flu shots

Things you can do to avoid getting the flu:

  • Get your flu shot

  • Ensure that people living with you are also vaccinated

  • Clean hands frequently with alcohol-based hand rubs or soap and water

  • Stay home if you are ill with new onset cough and fever

  • Stay at least 2 meters (6 feet) away from people who are ill with the flu

  • Avoid touching your face

  • Frequently clean commonly touched surfaces

  • Cough and sneeze into a tissue and dispose immediately and clean your hands. If no tissue is available cough into your sleeve, not your hands.

See also: our webpage on flu vaccination

If you have any questions or concerns, please check with your doctor or healthcare provider.

Support for Caregivers

Taking care of a family member with a disability requires lots of dedication and hard work. Often, caregivers themselves need a break to prevent burnout.

If you are a caregiver who would like to access resources and support, please visit the website of the Ontario Caregiver Organization (OCO). The OCO also provides a 24-hour help line: 1-833-416-2273 (CARE).

Beware of phone scams

Please be aware that phone scammers are using a spoofing technique: On the call display of the recipient, the calls appear as if they come from legitimate government agencies and police departments. The fraudsters often tell the potential victims that their social insurance numbers have been compromised or that they owe the government money.

Please read the CBC article, Scammers spoofing more than a dozen federal government departments to defraud Canadians, for more information.

Next meeting for Peer Support Group

We invite you to join us for our upcoming Peer Support Group! This group is a chance for patients and caregivers alike to get together to discuss questions, successes and challenges.

When: Tuesday, December 10th, 2019 1:00 pm – 2:00 pm

Where: The Dalglish Family 22q Clinic, Toronto General Hospital, 8th Floor

We run two simultaneous groups:

  • A group for parents or caregivers – an opportunity to talk to other parents and caregivers 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.
PLEASE NOTE: PARENT/CAREGIVER GROUP CAN BE ATTENDED ON-LINE FROM HOME. CONTACT US FOR THE WEBLINK.

Light refreshments will be provided. Please RSVP by Thursday, December 5th, 2019 by calling 416-340-5145 or emailing the clinic at 22q@uhn.ca.

We look forward to seeing you!!

Sincerely,

The Dalglish Family 22q Clinic Staff

Please inform us when a patient is in the hospital

A note to family members and caregivers of our patients:

If the individual with 22q is admitted into a hospital (including the Toronto General Hospital), please inform us as soon as possible. Calling us at (416) 340-5145 on weekdays is best. If you prefer to email us at 22q@uhn.ca, we will try to respond within 24 to 48 hours.

Unfortunately, we won't know that a patient is admitted into a hospital unless family members or caregivers inform us. Please let us know so that our team can help provide relevant documents and support.

Thank you.

Dr. Susan George wins Prix Galien 2019 Award for pharmaceutical research

One of our collaborators, and an endocrinologist familiar to many of our patients with 22q11.2DS, Dr. Susan George, received the Prix Galien 2019 Canada Research Award – often described as the equivalent of a Nobel Prize in pharmaceutical research.

Dr. George and her co-recipient, Dr. Brian O’Dowd, both of the University of Toronto, identified 70 previously-unknown G-protein-coupled receptors (GPCRs). These types of proteins are often involved in interactions with medications. The discoveries of Dr. George and Dr. O’Dowd, along with expansion of the work by a pharmaceutical company, will pave the way for new drug development.

Dr. George, an endocrinologist at the Toronto General Hospital, sees many patients with 22q11.2DS for related hormonal conditions such as thyroid disease and hypoparathyroidism (low calcium).

Congratulations, Dr. George!

Toronto General Hospital number four in the world

We are excited to share with you that, for the second year in a row, Toronto General Hospital (TGH) has been ranked one of the world’s best hospitals by Newsweek magazine. TGH is ranked number four – up three spots from last year’s inaugural listing – and is again the only Canadian hospital in the top 10.

The ranking, managed by a global market research company in partnership with Newsweek magazine, rated more than 1,000 healthcare institutions. The 2020 top 10 list was finalized by a panel of doctors, medical professionals and administrators from across four continents.

Here is the original article by Newsweek.

Virtual event replaces 10th Annual 22q at the Zoo event

Due to COVID-19 concerns, the 10th Annual 22q at the Zoo – Worldwide Awareness Day is replaced by a virtual event entitled:
Life is a Zoo – But the International 22q Foundation is Still Here for You!

On Sunday, May 17th, 2020, host a virtual zoo day in your own home with people who already live with you. Please do not invite others to your home to avoid spreading COVID-19. For more information on hosting the virtual zoo day, please visit the event website.

The website for the Toronto Zoo is www.torontozoo.com.

You can also see some fun posts from the Toronto Zoo:

Cancelled: April 14th Transition Clinic

Due to the evolving COVID-19 situation, there is a need for social distancing (staying 2 metres away from one another) as well as restrictions on non-essential ambulatory clinics. As a result, the 22q Clinic at the Hospital for Sick Children will be cancelling the April 14th Transition Clinic. We are currently making plans to transition these patients before the end of the summer.

We will consider alternate options for the May Transition Clinic at the end of April, should restrictions still be in place. Thank you very much for your understanding.

The Queen's Coronavirus Broadcast

In a special speech given on April 5th, 2020, Queen Elizabeth II spoke to the people of the United Kingdom and of the Commonwealth as we are faced with the COVID-19 pandemic.

The Queen gave a message of appreciation for front line workers for their dedication, and she thanked people who have been staying home to prevent spreading the virus to vulnerable people. She assured that we would overcome the coronavirus outbreak if "we remained united and resolute".

Here is the video of the Queen's full speech.

Video message from the 22q Society

The 22q11.2 Society is a group of researchers and physicians who specialize in conditions related to the chromosomal region 22q11.2 and the underlying biology. Our Clinic team collaborates extensively with other Society members in our research.

During this difficult time, the Society shares a special message with everyone in the 22q11.2 community. Here is the video from the 22q11.2 Society.

See if you recognize the following members of the Dalglish Clinic Team in the video (appearing in the following order):

We are all in this together! If you have any questions or concerns, please call our Clinic at (416) 340-5145 or email us at 22q@uhn.ca.

Remember: Stay calm, stay home, stay healthy, and wash your hands!

Additional funding for OW and ODSP recipients

Attention to all Ontario Works (OW) and Ontario Disability Support Program (ODSP) recipients:

You may now be eligible for additional funding for costs associated with COVID-19.

Please contact your caseworkers to apply.

Now available: COVID-19 info sheets

Our Clinic and the International 22q Foundation have generated multiple COVID-19 info sheets for individuals with 22q.

From our Clinic

International 22q Foundation - COVID-19 Series for Individuals with 22q11.2 Differences

For more information, please see our COVID-19 Information page. If you have any concerns, please be sure to speak with your healthcare provider.

Masks offered to patients and approved visitors to Toronto General Hospital

As of Wednesday, April 29th, all patients and approved visitors coming to UHN will be offered Level 1 procedure masks.

Patients and approved visitors who arrive without a mask will be provided a mask at door screening.

Patients and approved visitors who arrive with their own mask will keep their mask and continue to wear it as they would have otherwise—as long as it is in in good repair. If the mask is of poor quality and/or ill-fitting, staff will ask them to wear the mask the hospital is offering. The patients and visitors can keep their own mask should they choose.

Everyone who enters a UHN site will be asked to perform hand hygiene.

Cancelled: Transition Clinic in May

Due to the COVID-19 situation, the 22q11 Clinic at the Hospital for Sick Children will not be holding the group transition clinic on May 12th (Thursday). The patients will each have a virtual appointment with staff at the 22q11DS clinic instead.

Patients originally scheduled for the transition clinic day in April will also be rescheduled. More information will be posted shortly.

Thank you.

Available: Six COVID-19 info sheets

Our Clinic and the International 22q Foundation have generated multiple COVID-19 info sheets for individuals with 22q. There is now a sixth sheet for individuals with heart conditions. Here is the complete list:

From our Clinic

International 22q Foundation - COVID-19 Series for Individuals with 22q11.2 Differences

For more information about COVID-19, please see our COVID-19 Information page. If you have any concerns, please be sure to speak with your healthcare provider.

Thinking about visiting others? Please read this article

If you are thinking about visiting older people or those with chronic illnesses,

OR

if you have a chronic health condition (including 22q),

Please read this CNN article to learn about the risks of visits and the best way to proceed. Even though the article is titled "Dear Grandma, read this before you visit the little ones", the tips are also applicable for visits that involve our patients and people with chronic health conditions

Thank you.

22q and ZooM - a big Thank You!

What an AMAZING Day at the ZooM for 22q! Thank You for Joining Us and Raising Awareness!

The International 22q11.2 Foundation would like to thank all the event coordinators, co-hosts, foundations, 22q clinics and families around the world that continue to collaborate and work tirelessly to bring 22q to the forefront every day! The celebration happened because of YOU! Here are some photos. More to come, so please stay tuned. Thank you!

Update on TGH appointments that have been cancelled due to COVID-19

In March 2020, based on instructions from the government about the COVID-19 pandemic, the Toronto General Hospital (TGH) decided to delay many non-urgent in-person medical appointments. This was to allow the hospital to have enough staff and equipment to treat the people who are very sick with COVID-19. And also to help reduce the spread of the virus.

We are now waiting for direction from the government to begin to provide in-hospital services to more patients. For those of you who have delayed in-person appointments: as soon as we have your new appointment time, we will call and / or email you to let you know.

If you have any questions or concerns, please call our Clinic at (416) 340-5145.

However, if you feel very sick, please call 911 or go to your nearest hospital emergency room.

For information on the current pandemic, including what to do if you may have been exposed to COVID-19, please visit our COVID-19 information page.

Thank you very much for your patience and understanding.

Providing consent for medical activities during the COVID-19 Pandemic

For many medical activities, the patient or the substitute decision maker (SDM) needs to sign a consent form. However, during the COVID-19 pandemic we are not usually meeting face-to-face. Also, to minimize the spread of COVID-19, individuals should not share pens and papers.

For our Clinic and other medical related activities at the Toronto General Hospital (or any hospitals part of the University Health Network (UHN)), our staff member may ask you to give consent over the phone or through email instead of signing a form. This method of giving consent is legal and is supported by UHN’s Infection Prevention and Control Department.

For more detailed information, please visit the “Email Consent and Safety” section on UHN’s Virtual Visits webpage.

Thank you very much for your understanding and cooperation.

OHIP card validity extended

If you have a red-and-white OHIP card or an expired photo OHIP card, please continue to use your card. You do not need to convert or renew your card at this time due to the COVID-19 situation. For more information, please visit Ontario.ca.

Remember Mr. Fraser Fell

Our Clinic team members are saddened by the passing of Mr. Fraser Fell, a good friend of our Hospital, our Toronto General & Western Hospital Foundation, and our Dalglish Family 22q Clinic. It was through discussions with Mr. Fell that our name became the Dalglish Family 22q Clinic (formerly Hearts & Minds Clinic). He will be greatly missed for his many years of dedicated service to UHN.

For more information about Mr. Fell's life and contributions, please visit:

Helping Healthcare Providers and Scientists to Help You and Your Family

Please help healthcare providers and scientists to help you by taking this survey designed specifically for families affected by chromosome differences including 22q11.2 deletion and duplication syndromes:

https://redcap.chop.edu/surveys/?s=NK7DMDX3CM

G2MH, an international group of scientists and healthcare providers, many of whom are members of the 22q11.2 Society and supported by the US National Institutes of Health (NIH), is interested in learning about why families and persons affected by chromosome differences may or may not participate in research studies. In addition, given the current COVID-19 pandemic, G2MH is also hoping to learn about how families are coping during this difficult time.

Many thanks in advance for your help with this important work.

Dr. Anthony Lang receives Lifetime Achievement Award

One of our collaborators, Dr. Anthony Lang, received the Lifetime Achievement Award – Global Impact, one of the 2020 Dean’s Alumni Awards from the Faculty of Medicine at the University of Toronto. Among his many achievements and contributions was his pioneering in the use of specific rating scales for a number of neurological movement disorders. He also advocated for the use of experimental therapeutics in the treatment of Parkinson’s disease and was instrumental in changing the way that Parkinson’s disease is evaluated.

Congratulations, Dr. Lang!

When will the Toronto General Hospital resume its usual services?

In March 2020, based on instructions from the government about the COVID-19 pandemic, the Toronto General Hospital (TGH) decided to delay many non-urgent in-person medical appointments. This was to allow the hospital to have enough staff and equipment to treat the people who are very sick and would also to help reduce the spread of the virus. We realize this delay has caused a lot of anxiety for some patients and their families. Thank you for your continued patience and understanding.

Recently the Government of Ontario gave the go-ahead to begin planning for a safe and steady restart of appointments, procedures, and scheduled surgeries. UHN has a team that will determine when, where, and how, to resume activity in a safe and fair way. It ensures that we have enough personal protective equipment (PPE), staff, as well as space and policies for physical distancing.

To minimize the number of people coming to hospitals, we will maintain virtual visits where it is appropriate. For those of you who have delayed in-person appointments: as soon as we have your new appointment time, we will call and/or email you to let you know. We are also ready to quickly shift our services if we get another wave of COVID-19.

For information on the current pandemic, including what to do if you may have been exposed to COVID-19, please visit our COVID-19 information page. If you have any questions or concerns, please call our Clinic at (416) 340-5145. However, if you feel very sick, please call 911 or go to your nearest hospital emergency room.

Thank you very much.

Available: Additional information related to COVID-19

Our Clinic and the International 22q Foundation have generated multiple COVID-19 info sheets for individuals with 22q. The seventh and eighth sheets have just been published online. The complete list is available below:

The Immune Deficiency Foundation has also offered a series of short videos for individuals with immune deficiencies. The list of videos and the topics discussed can be found in a table on our COVID-19 information page.

Things we are doing to help you feel secure and comfortable when you come

As our Clinic gets ready to welcome our patients and families again, we are doing some things differently than before. There include:

  • hospital entrance restrictions
  • policies regarding visitors
  • limits to the number of people in elevators
  • the use of masks and other physical barriers
...among other things.

We strongly urge you to please review the pages about our Clinic Operations and Directions before coming for your appointment.

Our goal is to help you feel secure and comfortable. If you have any concerns, please kindly check with one of our staff members. We look forward to seeing you again.

Caregivers allowed to accompany patients who require support

On Monday June 29th, 2020, the policy on visitors to the Toronto General Hospital will be expanded. Patients who meet certain criteria will be permitted to bring along a caregiver to their medical appointments. Please see the About Visitors section of our Clinic operations page for more details.

If a patient needs to come to our Clinic with a caregiver, please call us (416) 340-5145 or 22q@uhn.ca about a week in advance so that we can prepare a document for the caregiver. Thank you.

What the Caller ID shows when we call you

The Caller ID function is active on the Toronto General Hospital phone system. From now on, when our staff members call you, you will see the caller ID as “UNIV HLTH NTWK (416) 340-4800“ instead of “unknown caller”.

(416) 340-4800 is the general line for the Toronto General Hospital. If you need to reach us, please call our direct line: (416) 340-5145. You can also email us about non-medical matters at 22q@uhn.ca.

Thank you.