Canadian Immunodeficiency Society NewsletterJuly 2011
In This Issue
World Primary Immunodeficiency Day
Chaim Roifman Scholar Award
Jeffrey Modell Canadian Immunodeficiency Network Update
Value for your donation
Featured Patient Story

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April 29, 2011 was World Primary Immunodeficiency Day. The CI Society was pleased to have Canadian governments from the east to the west coasts recognize the day through official proclamations. Media provided coverage and ran the 10 Warning Signs. Awareness of and education regarding Primary Immunodeficiency are priorities for the CI Society. You can help us throughout the year by forwarding this newsletter to a friend or colleague, joining us through social media (Facebook, LinkedIn), or participating in one of our many events. The CI Society is working to make a difference one life at a time.

World Primary Immunodeficiency Day April 29, 2011 


To read the official press release "Provinces and major cities across Canada proclaim April 29 World Primary Immunodeficiency Day" Click here


Dr. Stuart receives awardChaim Roifman Scholar Award


On February 28, 2011 Richard Thompson, Executive Director of the CI Society, presented the Chaim Roifman Scholar Award For Young Investigators to Dr. Stuart Turvey of the University of British Columbia for his research proposal entitled "From rare severe primary immunodeficiencies to common subtle immune defects". The Chaim Roifman Scholar Award is generously supported by Talecris Biotherapeutic, CSL Behring, Baxter Bioscience, and other donors.


Click here for Dr. Stuart Turvey's Biography


Chaim Roifman Scholar Award For Young Investigators  November 4 deadline and application




Jeffrey Modell Canadian Immunodeficiency Network Update


by Linda Pires

The Jeffrey Modell Canadian Immunodeficiency Network serves as a highly respected healthcare resource across Canada fostering early diagnosis of Primary Immune Deficiencies. Through networking, knowledge dissemination and communication among healthcare professionals, patients and the general public, the Network can ensure that patients have access to excellent care.


Great Grants on the Go

The Network continues to support its community in the educational and diagnostic developments of PI. Dr. Reza Alizadehfar recently educated University of Montreal respirologists on the diagnosis and treatment of PI. Dr. Fotini Kovadas will build patient support and education with Alberta Children's Hospital's first ever Kids Day scheduled for August 2011. Our desire to educate does not end with our fellows. The JMCIN strives to reach out to all physicians and patients. The CI Soceity's What is PI booklet is now in its production phase. This tool will aid patients and physicians in undertanding how the immune system works, what is a PI, and how it is diagnosed and treated in Canada. If you have an educational or diagnostic project to better the lives of patients with PI, submit a grant request by downloading a Grant Application.  


Lights, Camera, Action on Primary Immunodeficiency Video Conference Rounds

Remaining scheduled dates for 2011 are Monday, September 26th from IWK Health Center (Halifax) and Monday, November 28th from Sainte Justine (Montreal). With permisison, case studies continue to be archived on the CI Society Physicians Only webpage. Most recently, "Listen to your patients (s)he is telling you the diagnosis, adapted from Willim Osler (1849-1919)" was presented by Drs. Stuart Turvey and Anne Junker, BC Children's Hospital, University of BC. For additional information please contact Linda Pires, Manager, JMF Network of Centres.


Join The CI Society as an Affiliated Member 

The JMCIN is pleased to welcome you as an Affiliated Member. If you are a physician who does not specialize in Immunology but finds a growing need for it in your practice, join the JMCIN today. Your membership will provide you with the opportunity to participate in all JMCIN educational events, along with direct access to all 10 Network sites for expert guidance with your patients. These sites include:

Capital Health, Edmonton--Dr. Stuart Carr

IWK Health Centre, Halifax--Dr. Tom Issekutz

Hamilton Health Science Centre--Dr. Peter Dent

Montreal Children's Hospital--Dr. Reza Alizadehfar

CHU Sainte-Justine, Montreal--Dr. Elie Haddad

Hopital CHUQ-CHUL, Quebec City--Dr. Aubert Lavoie

Toronto Hospital for Sick Children--Dr. Adelle Atkinson

St. Paul's Hospital, University of BC--Dr. Amin Kanani

BC Children's Hospital--Dr. Stuart Turvey

Winnipeg Health Science Centre--Dr. Chrystyna Kalicinsky


If you are a physician treating Primary Immunodeficiency Disease patients, please indicate your interest to join the network.


For all Network enquires, please contact Linda Pires, Manager, JMF Network of Centres at


At CI Society 77 cents of every dollar donated goes towards programs

According to a report by Money Sense, this is better than most charities. 


Money Sense, a Canadian magazine and website with a focus on managing personal finances, published a report on the efficiency of different charities: Charities 100 Rankings Health. Here are some of the charities listed and their percentage of spending going to programs.


CNIB 59%

Canadian Breast Cancer Foundation 52%

Canadian Cancer Society Ontario Division 55%

Canadian Cystic Fibrosis Foundation 62%

Canadian Diabetes Foundation 43%

Kidney Foundation of Canada 51%

Multiple Sclerosis Society of Canada 56%


Compared to this report, the CI Society is much more efficient. You can feel good knowing with the

CI Society your donation dollars go further.




Kids & Families get together this summer
The CI Society is pleased to be sponsoring and hosting events for kids and families through St. Justine Hospital in Montreal, June 26, the Toronto Hospital for Sick Children, July 17 and Alberta Children's Hospital in August. If you have received an invitation, don't forget to RSVP.




CI Society Meet & Greet for adults held May 31 at Toronto Pub

Individuals joined Richard Thompson (Executive Director) Brenda Reid and Loris Aros (Nursing Awareness Program) and Kim Kerr (CIS Fundraiser) to learn about the programs and activities of the CI Society. It was a lively discussion filled evening. Special thanks go out to Greg & Allison of Finn MacCools for a great location and service.



Golf banner

Enjoy the full tournament experience at Royal Ontario, 5378 Trafalgar Road, Milton, for $150 per person! Included are BBQ lunch,18 holes of golf, cart, prime rib dinner, auction and raffles. Sign up today!


Golfer Sign up & Sponsorship Package




October 16 Scotiabank Toronto Waterfront MarathonMarathon Logo

Join our team for the upcoming marathon. Run the full, half, or run/walk the 5 km. How do I sign up?  Email: Collect pledges for the CI Society team and receive a free registration. Each team member will receive a team T-shirt and gift pack.The runner/walker who raises the most funds for the CI Society will win a Special Prize - a relaxing evening in Toronto with a gourmet dinner, and a one night stay at the Le Royal Meridien King Edward Hotel.

Team members todate: Greg Donovan, Tammy Lyle-Gravlev, Darla and John Paul Jones, Kim Kerr, Shirley Lau, Karen Lee, Donald Metcalfe, Brenda Reid, Chaim Roifman, Richard Thompson



Celebrate Your Family Awareness Contest


In honour of PI Awareness we are pleased to announce this year's winners of the national Celebrate Your Family contest. Colin Kadey, Jaxon Gravlev and Alison Klein each won a Kodak Easyshare Digital camera provided by our sponsor Kodak. Entries submitted by the draw winners... 

Jaxon Jaxon      Artwork1 Colin      artwork2 Alison


Toni during Trek64 year-old with a Primary Immunodeficiency takes

on challenging trek to world's 3rd  highest mountain. 

Toni, who has Common Variable Immune Deficiency (CVID), hoped to raise awareness of this disease while taking on a challenging 28-day trek to the world's 3rd highest mountain, Kanchenjunga. Kanchenjunga  (8586m/28,171 ft.) is in the Himalayas, east of Mt. Everest, on the Nepal-India border. The remote mountain can only be reached on foot.


Toni, thanks to diagnosis and treatment, and unlike many with CVID, is able to maintain an active life-style. Toni managed by carrying out her transfusions according to arrangements made by her health care team to accommodate the trekking schedule. She took additional precautions as dictated by the vulnerabilities inherent in her condition.

You can read about her story here:  Toni's Story


The CI Society continues to grow and reaches more people everyday. We couldn't do it with you. Thank you for your support.

Richard Thompson, CFRE
Executive Director
Canadian Immunodeficiency Society

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