|CI Society Newsletter
Canadian Immunodeficiency Society providing patient support, education and research for a cure
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2008 was a year of progress and much activity. The CI Society awarded its first research grant for research into Primary Immunodeficiency Disease. The Jeffrey Modell Canadian Immunodeficiency Network grew to a total of ten health care facilities across Canada actively involved in education and awareness. A series of national PID Video Conferences were held. A physicians' webpage for diagnostic tools, case studies and resources was launched. Emergency assistance for families through the Alastair Fund was expanded to Montreal and Vancouver. A pilot project for patient support in hospital was started. A survey of patients regarding treatments was completed. All these activities support our goal of providing patient support, education and research for a cure of Primary Immunodeficiency Disease.
Our successes are due to the dedication and efforts of the CI Society's board, staff, volunteers and network members. These individuals unselfishly gave of themselves, their time, their drive, and their determination to save lives and create success stories. We are sincerely grateful to them.
As we head into 2009, which many economists are predicting will be a challenging year, we ask for your continued support and commitment. With your involvement we can continue to create success stories. Thank you.
|Dr. Françoise Le Deist receives The Chaim Roifman Scholar Award for 2008
On September 19, 2008 Richard Thompson, Executive Director, CI Society, was honoured to meet and present Dr. Franç
oise Le Deist The Chaim Roifman Scholar Award for Research supported by Talecris Biotherapeutics. This valuable research will be conducted at the Research Centre of CHU Sainte-Justine, Montreal.
The Chaim Roifman Scholar Award, first launched in 2007, is supported by Talecris Biotherapeutics and the CI Society. For further information on the Award please click here:
|Jeffrey Modell Canadian Immunodeficiency Network Update
|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 ensures that patients have access to excellent care.
And the grant goes to?
The Network continues to support its members in educational and diagnostic developments. Dr. Christine McCusker of Montreal Children's Hospital was awarded a seminar series grant to aid in the training of her fellows in both basic and applied immunology. To download a grant application click here:
Dr. Eyal Grunebaum, Toronto Hospital for Sick Children, and James Kovack, Talecris Biotherapeutic, visit the CI Society information table at the Canadian Society of Allergy and Clinical Immunology (CSACI) Annual Scientific Meeting held October 23-26, 2008.
Accreditation Acquired for Primary Immunodeficiency Video Conference Rounds
The Network is pleased to announce that effective 2009 all PID Video Conference Rounds will be accredited through the Royal College of Physicians and Surgeons of Canada for 1.5 hours. Join us on February 2nd, May 4th, September 14th and December 7th for stimulating case based discussions at one of our nine participating centres. For additional information please contact Linda Pires, Manager, JMF Network of Centres at:
Say Hello to Drs. Dent and Kalicinsky
In 2008 the Network welcomed two additional centres to its roster. Dr. Peter Dent of the Hamilton Health Science Centre and Dr. Chrystyna Kalicinsky of the Winnipeg Health Science Centre are great assets to our team. The Network is now comprised of ten sites across Canada:
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 - Hôpital 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 - B.C. Children's Hospital
Dr. Chrystyna Kalicinsky - Winnipeg Health Science Centre
If you are a physician treating Primary Immunodeficiency Disease patients, please indicate your interest to join the network by contacting Linda Pires, Manager, JMF Network of Centres at: firstname.lastname@example.org
|The CI Society has launched a physicians' webpage. Here you will find diagnostic tools, presentations and resources to assist in diagnosing and treating individuals with Primary Immunodeficiency Disease (PID).
Under Diagnostic Tools:
Management of primary antibody deficiency with replacement therapy Editor, Chaim Roifman M.D., Professor of Paediatrics and Immunology, University of Toronto, March 2008
Under Case Studies:
MAC and T cell deficiency in a 14 year-old
Presenter, Anne Junker, BC Children's Hospital, November 2008
Jeffrey Modell Foundation Research Library
The Jeffery Modell Foundation (New York City) provides comprehensive materials via the National Primary Immunodeficiency Resource Center Research Library. This resource, containing thousands of recently published papers, is excellently categorized and cross-referenced.
Please sign up for a username and password by clicking here:
Fellow Training Opportunities
The CI Society in conjunction with Talecris Biotherapeutics continues to support fellows in Canadian fellowship programs who wish to expand their education in immunodeficiency. In 2008 Toronto Hosptial for Sick Children welcomed Dr. Anne Pham-Huy and is also delighted to have Drs. Tracy Pitt & Kenneth Liew for the next few months.
To apply click here:
|Adam's Game Golf Classic 2008
|The Adam's Game Golf Classic 2008 was, once again, an outstanding success, thanks to the dedication and commitment of volunteers, sponsors and the golfers who played despite the rain. In the words of Jeff Bakker of Baxter: "The energy and the commitment of the supporters of the CI Society was very evident throughout the day and could not be quelled by the rain". Held at the Carlisle Golf and Country Club, the day was action packed with 116 golfer participating. A dinner and an auction followed the game.
The net amount raised was in excess of $23,000, bringing the total raised in two years to just over $43,000 to provide increased awareness of and research into Primary Immunodeficiency Disease. Richard Thompson, Executive Director, said " We are proud to have the support of families like Carol, Blair and their son Adam. They are truly the ambassadors for the work of the CI Society and we are pleased to recognize them for their efforts". Adam Cleveland was presented a golf trophy award.
For making the day such a success, special thanks is given to the volunteers:
Chris Brown Debbie Dickenson
Carol Cleveland Blair Cleveland Leslie Brooks-Jesse Mark Jesse
Steve Naylor Michelle Naylor
Stacey Kay Peter Kay
Sandra Dwyer Lori Peters
Josée Patton Marion Benson
Lee Symons Rob Symons Yvonne Young Frank Young
And the CI Society staff, Jeannine Rothblott and Richard Thompson.
Adam's Game Golf Classic 2008 would not have been possible without the support of our generous Sponsors:
Dinner Sponsor: Talecris Biotherapeutics
Lunch Sponsor: Baxter BioScience
Diamond Sponsors: CDP Communications
Scotia Private Client Group - Scott Rands
Platinum Sponsors: Acme United
Multi Mark Ltd Zebra Pen Canada
Gold Sponsor: Esselte
Hole-in-One Prize Sponsor: Concept Ford, Georgetown
Hole Sponsors: Acco Brands
Bridgeport Asset Management
Martyn Dooley & Partners
New York Fries
Scotia McLeod Private Client Group
Watch for news of Adam's Game Golf Classic 2009!
|Loyola Students raise funds for CI Society
|From May 6th to 8th Loyola High School in Montreal Quebec, hosted the 2008 Student Stock Competition. The Student Stock Exchange is a non-profit organization that fosters the entrepreneurial spirit. The program started in 1995 and has has expanded to 518 student-run companies from all over Quebec. The program is designed to take the theories Grade 11 economics students learn and transform them into practice by having the students design a company, form a board of directors, sell shares, and select a charity--all with the ultimate goal of selling a product to the community.
One company, "Frozen Over", sold ice cream sundaes to the students of Loyola High School. It was viewed to be the busiest booth at Loyola with over 350 customers on the first day, 400 on the second, and a record 500 on the third. The board of directors: Kevin Durning, Keith Wosnitza, Mathew Kozycky-Czebruk, Paul Fortin, Marcus Saylor, Marco Campoli and Mark Miele elected to donate 50% of all profits to the CI Society. Keith Wosnitza said "We learned so much in doing this project-- hard work, dedication and all about the entrepreneurial spirit! We are so glad to donate our profit to the CI Society."
Patient Support VolunteersVolunteers are required for a special program operating within the Toronto Hospital for Sick Children. In this program a volunteer is matched to family in hospital to provide support. This is an opportunity to establish a very special one-on-one relationship with a child in need. Your time will brighten a child's day.
Interested in helping out with events? Volunteers are welcome to participate in two successful CI Society events: Adam's Game Golf Classic (held in the fall) and Shop 'Til You Drop (held in the spring). Volunteers are needed for logistics on the day of the events and for promotion and sponsorships prior.
Correction: In the spring 2008 issue we reported that the Montreal Children's Hospital, McGill University, hosted the first in a series of National PID Video Conferences. The case study The MHC-II deficiency was presented by Dr. Moshe Ben Shoshan. We apologize for the error.
If you have questions, please feel free to contact us. We look forward to hearing from you.
Richard Thompson, CFRE
Canadian Immunodeficiency Society