Canadian Immunodeficiency Society Newsletter December 2009
In This Issue
Family Day in Montreal
Save the Date
Jeffrey Modell Canadian Immunodeficiency Network Update
Conference participation

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This August, the CI Society had the pleasure of hosting a Kids' Picnic in Markham, Ontario, for children born with with most severe form of Primary Immunodeficiency Disease (called SCID). The main treatment for these children is a bone marrow transplant and it is a lengthy experience involving long stays in isolation, chemotherapy, finding a donor, recovery and rehabilation. The reward of seeing these kids playing outside with others is pure joy. It's made possible by the dedication and commitment of many, including you, our donors, who help fund physician education, public awareness and research into a cure.
It's a difficult recession year for many and we understand, but for those in a position to help, we still need your involvment.
Please consider making a donation or purchasing cards designed by children at the Kids' Picnic by visiting Creating Success Stories

Kids card banner
You can read about successes - Children's Stories
Consider volunteering in 2010
Your involvement is welcomed
Night at Museum PosterCHU Sainte-Justine's Family Day in Montreal  by Marie-Claude Levasseur inf.bsc,  Immunolgy-rhumatology CHU Sainte-Justine 
On June 28th, the immunology team of  CHU Sainte-Justine created a very special event for patients. Because home therapy can sometimes amplify the feeling of solitude, I thought it would be great to give children and their parents that were involved in home treatment a chance to meet and share their life experiences.  With the support of a grant from the CI Society's Jeffrey Modell Canadian Immunodeficiency Network, a donation from CSL Behring and the collaboration of Isabelle Jomphe (social worker) we were able to make that dream come true.
In fact, all the patients that are treated with home therapy were invited, with their families, to get together for a day in nature.  The children were divided into small groups of the same age and joined by their parents.  As teams they had to complete the differents circuits of the wonderful site d'Abre en Arbre in Mirabel. Other activities, such as a trampoline, volleyball, and special play areas and gifts were available for children of all ages.  A lunch was served during which families were able to talk, share experiences and build lasting relationships. 
The experience has been a total success. Both children and parents have said how much they appreciated the day!  As a clinician nurse, I believe these types of events are very important and I will make every effort to repeat this event next year.

Physicians Save the Dates, June 1-5, 2011
The Jeffrey Modell Foundation presents World Immunology Meeting, "A Global Get-Together". Forty-seven countries will be be represented at the June 1-5 event in New York City.
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 PID. In July 2009 the JMCIN funded two patient picnics in Quebec. The St Justine's Hospital and Montreal Children's Hospital picnics cultivate relationships among  PID afflicted families. They provide families with an opportunity to remove their chains of solitude and support each other through discussions of their experience. In addition we have opened our educational doors to general physicians. The CI Society is pleased to sponsor the Quebec Physician's formation on PID taking place in the Spring of 2010. This symposium is open all Quebec physicians who have an interest in treating/recognizing primary immunodeficiencies. Hosted by 3 JMCIN sites (Montreal Children's Hospital, St. Justine's Hospital and CHUQ-CHUL) it is sure to be a success. Finally, the CI Society's What is PID booklet is now beginning its production phase. This tool will aid patients and physicians in understanding how the immune system works, what is a PID, and how it is diagnosed and treated in Canada. Distribution to hospitals across Canada is scheduled for late spring 2010. If you have an educational or diagnostic project to better the lives of patients with PID, submit by clicking on Grants and download an application.  
Lights, Camera, Action on Primary
Immunodeficiency Video Conference Rounds
Our Network accredited rounds have been a great success with our most recent December 7th set as our final 2009 installment. The caliber of these seminars has resulted in 1 additional site joining our broadcast, totaling 11 telehealth locations plus a live webcast. Please welcome The University of Western Ontario to our rounds. The PID Video Conference Rounds are accredited through the Royal College of Physicians and Surgeons of Canada for 1.5 hours.  Our 2010 dates will be distributed shortly. 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 announce the expansion of our membership to Affiliated Members. 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. Email Linda Pires, Manager, JMF Network of Centres, at . 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 of your patients. These site include:
Dr. Stuart Carr - Capital Health, Edmonton
Dr. Tom Issekutz - IWK Health Centre, Halifax
Dr. Peter Dent - Hamilton Health Science Centre
Dr. Reza Alizadehfar - Montreal Children's Hospital
Dr. Elie Haddad - CHU Sainte-Justine, Montreal
Dr. Aubert Lavoie - H˘pital CHUQ-CHUL, Quebec City
Dr. Adelle Atkinson - Toronto Hospital for Sick Children
Dr. Amin Kanani - St. Paul's Hospital, University of B.C.
Dr. Stuart Turvey - BC Children's Hospital
Dr. Chrystyna Kalicinsky - Winnipeg Health Science Centre
The Network proudly welcomes Dr. Anne Phan Huy, of Children's Hospital of Eastern Ontario to the Jeffrey Modell Canadian Immunodeficiency Network. We look forward to being affiliated with you.
If you are a physician treating Primary Immunodeficiency Disease patients, please indicate your interest in joining the network by contacting Linda Pires, Manager, JMF Network of Centres at  

Conference Participation
This fall the CI Society was pleased to participate as an exibitor at the 47th Annual Scientific Assembly of the Ontario College of Family Physicians,  the Pediatric Nursing Conference, and the Canadian Society of Allergy and Clinical Immunology Conference. We provided handouts of the 10 warning signs and our services to raise awareness.
Night at Museum PosterPhoto: Todd Rolson and Mark Campbell (HUB International Insurance Brokers) supporting their RNAO Auto & Home Discounted Insurance Program visit the CI Society booth at the Pediatric Nursing Conference. 

Adam's Game Golf Classic
 by Co-chairs Blair & Carol Cleveland

Blair        Golf Adam        Golf Talecris


"We are extremely grateful to everyone who contributed to the tremendous success of Adam's Game Golf Classic 2009. With the support of our committee, volunteers, generous sponsors and golfers we are very proud to have raised a little over $20,000 for the CI Society.


It's no secret what a challenge this year has been in every way, making this accomplishment all the more exciting. This contributes in a very meaningful way to making the CI Society effective in the key efforts of education of front line medical care professionals, research and family assistance. Quite simply, this money goes towards work that will help save the lives of many Canadians affected by primary immunodeficiencies.


Lastly, we want to express our gratitude to everyone who took the time to join us at Lionhead. We recognize that many took personal vacation time to support Adam's Game Golf Classic and we really appreciate it.... thank you very much.


All the best as we look forward to 2010 -- hopefully a year full of good health and success for all of you."

A special thank you goes out to new sponsors who joined this year:
FFF Enterprises, Hilary's Distribution Ltd., and Stephen Squibb of  To see a list of all sponsors visit Adam's Game Golf Classic 
Shop 'til You Drop - Come Shop for a Cause
 by Jeannine Rothblott 
crowdsWhat an event! What a turnout! Over 50 fantastic vendors! Raffle prizes too good to resist and happy raffle winners! Amazing volunteers and even great weather to draw out the crowds too - over 700 visitors!
Thank you to all the wonderful volunteers who helped bring together this event. With their endless energy and welcoming smiles the event ran smoothly. A special thank you goes out to Nancy McKinney who volunteered her graphic design talents to help us create a beautiful and stylish flyer.
The CI Society is grateful for our many generous sponsors and a very warm thank you to all our fantastic vendors. Without their  "gotta have it" items this event could not exist. They worked hard through the busy long day to generate sales, always with a welcoming smile.

We encourage all of you to visit our website where you will find all our vendors listed and, with just a click on their name, you can learn more about them at Shop 'til You Drop 

Watch for Shop 'til You Drop October 2010
Volunteers who make a difference!  
Volunteer Profile
We sincerely thank Jamie Tyrrell, who has completed a year volunteering in a pilot Patient Support Program.  Jamie has completed her first year of nursing at Ryerson/George Brown and also works as a lifeguard and swim instructor for the City of Toronto.  "Jamie's dedication and committment has been appreciated by several families with children admitted to SickKids. She has truly made a difference in their lives and helped to make their hospital stays easier" says Wendy Shama, MSW.
We thank all of our volunteers without whom our events would not be possible.

Adam's Game Golf Classic
Adam, Carol & Blair Cleveland, Caryn & Shayne Beechey, Marion Benson, Chris Brown, Debbie & Bill Dickenson, Sandra Dwyer, Leslie Brooks-Jesse, Mark Jesse, Sarah & Kevin Hall, Stacey & Peter Kay, Karen Livingston, Steve & Michelle Naylor, Josee Patton
Shop 'til You Drop
Loris Aro, Sabrina Cheng, Marcie Fisher, Johanna Flagal, Sara Hall, Trudy Ingles, Amelia Kaplan, Nancy McKinney, Jodi Moss, Deborah Perl, Sharon Rothblott,  Cristina Segal, Ada Vital
If you are interested in volunteering in any of our programs please
In the Spirit of the Holidays! 
Rotary & Santa
The Rotary Club of Brampton Heart Lake hosted breakfast with Santa for a local community shelter. Children and parents visited with Santa, received gifts and sang songs. The CI Society was invited to join for breakfast and received a present to help us with our work too. Thank you Rotary Club of Brampton Heart Lake.
Richard & Rotary
Richard Thompson, Executive Director, CI Society presented a certificate of thanks to Deb Harvey-Dickson, President, Rotary Club of Brampton Heart Lake
You are helping us to create success stories for individuals born with a broken or missing immune system. Watch for more events and new programs in 2010.

Thank you for your support,

Richard Thompson, CFRE
Executive Director
Canadian Immunodeficiency Society

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