Additional Resources for 22q11.2DS

The Dalglish Family 22q Clinic and the UHN are not responsible for the content of external internet sites.

In addition to the resources provided in this section, please also see:

22q11.2DS information provided by other hospitals and academic institutions

[Return to top]

Books and educational seminars on 22q11.2DS

22q Through My Eyes by Jordan Nanos
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.

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!

Footprints of Hope: VCFS (Velo-Cardio-Facial Syndrome) by Raymond Tanner.
This book is a compilation of stories from families from Australia, Israel, France, New Zealand, South Africa, United Kingdom and the USA who tell about their trials and tribulations in bringing up a child with VCFS. It also describes Raymond’s life story (aged 54—diagnosed at 43) and his two sons—James, deceased aged 9 days old, died 18 years ago; Andrew, aged 16. Proceeds from the book will go to the VCFS Educational Foundation and to the VCFS Foundation Queensland Inc. new VCFS Clinic project.

Educating Children With Velo-cardio-facial Syndrome (Also Known As 22q11.2 Deletion Syndrome and DiGeorge Syndrome) by Donna Cutler-Landsman.
The author also hosts seminars and webinars on the topic. Please visit http://www.cutlerlandsman.com/ for further information.

A Different Life: Growing Up Learning Disabled and Other Adventures by Quinn Bradlee.
Bradlee is the son of long-time Washington Post executive editor Ben Bradlee and bestselling author Sally Quinn. He was diagnosed with velo-cardio-facial syndrome at age 14. In this funny and fast-moving book, he talks about his "different life" of dealing with learning difficulties and social challenges.

[Return to top]

22q11.2DS foundations

[Return to top]

Support Groups

  • Chromosome 22 Central

    HEAD OFFICE:
    Chromosome 22 Central
    c/o Murney Rinholm
    7108 Partinwood Drive,
    Fuquay-Varina, North Carolina, 27526 USA
    Tel (919) 567-8167
    EMAIL: usinfo @ c22c.org (remove spaces)

    Contact Murney if you have questions about donations or C22C operations.

    FOUNDER:
    Stephanie St-Pierre
    338 Spruce Street North,
    Timmins, Ontario, Canada P4N 6N5
    EMAIL: info @ c22c.org (remove spaces)

    Contact Stephanie if you want to submit info for our newsletter, advertise an event or research on our website, join our group or connect with families in our database, or have questions about any of the C22 conditions or our group in general.

  • Canadian Congenital Heart Alliance (CCHA)

    CCHA
    C4-233 Cross Avenue, P.O. Box 233
    Oakville, ON L6J 2W9

    Email: info @ cchaforlife.org (remove spaces)

    90-95% of children with heart defects will live to adulthood and well beyond. CCHA is the only non-profit organization in Canada that supports all Canadians with congenital heart defects.

[Return to top]

History of 22q11.2DS

The History of the Chromosome 22q11.2 Deletion from the website of The Children’s Hospital of Philadelphia, PA, USA

[Return to top]

Other 22q11.2DS Clinics

Here is a map that shows the locations of all the 22q11.2DS clinics in North America.

[Return to top]

22q11.2DS information in additional languages

Note: The 2015 Guidelines are for managing adult patients. The 2011 Guidelines are for patients from infants to adults.

OrganizationsPractical Guidelines, Consensus Document, and Pamphlets
English
(Original)
International 22q11.2 Foundation (for families)

International 22q11.2 Society (for researchers and medical professionals)
FrenchGeneration 22
GermanKiDS-22q11 e.V.
ItalianAssociazione Italiana Delezione Cromosoma 22 ONLUS
SpanishAsociación 22q11
DutchNetwerk VCFS
Traditional Chinese
Simplified Chinese

[Return to top]