March 2008

Today in the news I read about the scrutinizing of the charitable sector by Revenue Canada. As a Certified Fundraising Executive (CFRE) and a member of the Association of Professional Fundraisers I am proud to lead the CI Society in upholding the code of ethics for fundraising. The CI Society subscribes to and has a strong commitment to using donor's dollars wisely.

As I reflect on 2007, I remember the children who have lost their lives to a Primary Immunodeficiency. Their families and those who knew them will be forever touched. I also remember the faces and smiles of the children whose treatments have given them a fighting chance for life. I work in the hope that every child born with a Primary Immunodeficiency gets that chance for life.

I would like to thank and commend the volunteers and staff for their dedication and commitment to that hope.

back top

Dr. E. Richard Stiehm Honoured

At the 2nd Confernece on Host Defense in Edmonton on September 27, 2007 Dr. E. Richard Stiehm, professor of pediatrics in the division of allergy, immunology and rheumatology at Mattel Children's Hospital at UCLA, was presented with The Canadian Immunodeficiency Society Award for outstanding achievement.5

The plenary lecture A century of immunodeficiency 1920-2020 was presented by Dr. E. Richard Stiehm. The 2nd Conference on Host Defense also presented Dr. F. Le Deist: CD3 zeta deficiency, Dr. E. Grunebaum: Purine immunodeficiency-novel treatments, Dr. S. Turvey: The emerging role of innate immunity, and Dr. Troy Baldwin: T cell selection and immune tolerance. Thanks are given to Dr. Eyal Grunebaum for his contributions to making the conference highly successful, to moderators Drs. A. Atkinson, R. Alizadehfar, S. Carr, A. Kanani, and to the fellows/network members for their short case presentations.

The 2nd Confernece on Host Defense was supported by the Jeffrey Modell Canadian Immunodeficiency Network Program of the CI Society.

back top

Videoconference on PI

On February 25, 2008, Dr. Reza Alizadehfar of Montreal Children's Hospital will be hosting the first in a series of Videoconferences on PI. During this series, interesting cases of patients suffering or suspected to be suffering from primary immunodeficiences will be presented and discussed.

Open to physicians, the aim of this videoconference is to increase awareness regarding this important health issue and to increase the knowledge regarding the diagnosis and management of these conditions. Please indicate your interest by emailing network@cisoceity.com for more imformation.

back top

Nursing Awareness

by Brenda Reid, RN, MN
This year, two Nursing Awareness lectures were held: Nursing Rounds at Toronto Hospital for Sick Children in April 2007 and at Stollery Children's Hospital in Edmonton in September 2007.

The lectures were well attended and evaluation forms were very positive with comments such as "will definitely influence my practice for PI patients" and "unaware of the differences in PI patients prior to lecture". There has been increased collaboration in nursing practice throughout the year from nurses in Ottawa, Edmonton, and within Toronto Hospital for Sick Children via e-mail and telephone, particularly around challenging patients receiving IVIG and strategies to manage problems.

If you are a nurse with an interest in the care and mangement of patients with Primary Immunodeficiency, contact us at nursing@cisociety.com.

back top

Adam's Golf Game Classic a huge success!

Pictured - Adam and his father Blair Cleveland to the left with golfers Joe, Marie-Christine and Tom.

Adam's Game Golf Classic was an unqualified, OUTSTANDING success. There's no other way to describe how happy Carol and I are with the results.

The final total contribution was in excess of $20,000, which is significantly more than we originally had hoped for. Due to excellent support from our sponsors, more prize contributions than expected, and an extremely enthusiastic field of golfers, we were able to achieve this result.

There are 2 groups who deserve special recognition - our committee of organizers and the volunteers who were there on Oct. 3 for the event:

Organizing Committee:

Chris Brown
Debbie Dickenson
Leslie Brooks-Jesse
Mark Jesse
Steve Naylor
Michelle Naylor
Stacey Kay
Peter Kay

Volunteers:

Chris Brown
Debbie Dickenson
Leslie Brooks-Jesse
Mark Jesse
Steve Naylor
Michelle Naylor
Stacey Kay
Sandra Dwyer
Josée Patton
Marion Benson

Without the creativity and dedication of these 2 teams, Adam's Game Golf Classic would not have run as smoothly nor would the day have been as successful.

Lastly, many thanks to the staff of the CI Society - Executive Director, Richard Thompson, and Development Officer, Jeannine Rothblott. Their commitment to the event and their unwavering assistance were invaluable.

A note of apology to our sponsors and the golfers is also due here. I personally have been terribly delayed in getting the Tribute Book completed. It will be done early in 2008.

Finally, please save Wednesday Oct 1, 2008 because we will be back at Carlisle for another terrific golf day in support of the Canadian Immunodeficiency Society.

Adam's Game Golf Classic 2007 Sponsors:

Dinner Sponsor: Talecris Biotherapeutics
Lunch Sponsor: Baxter BioScience
Diamond Sponsors:
Esselte
Scotia Private Client Group - Scott Rands
Platinum Sponsors:
Acme United
CSL Behring
Multi Mark
Zebra
Gold Sponsors:
Access Therapeutics
Avery
Hole-in-One Prize Sponsor: Concept Ford, Georgetown

back top

Fashion Nite Fundraiser

by Jeannie Rothblott
On November 29th we hosted a night of shopping, and neither the rain nor snow kept the women away. They browsed and shopped to their hearts' delight and learned all about PI and the CI Society along the way.

We had Razzle Dazzle Jewels, Leontine Hagoort designer purses from Holland, American Apparel for the hip of all ages, Luved Clothing where the look is "smart casual", Margarita Wear to spice up the workout wardrobe, Madelaines' Mom with gifts for newborns to tweens. Fabulous door prizes were donated by DBK Salons, Joseph's Flowers and Uptown Spa; the winners were in awe.

We send a very big thank you to ALL our vendors, donors and guest shoppers. A special thank you goes out to Brenda Reid, RN, who while happily shopping, discussed and informed everyone about PI.

What an evening it was! A success for the first CI Society event of it's kind! We will do it again.

back top

Volunteer Opportunities

Opportunities exist in supporting children with Severe Combined Immunodeficiency Disease (SCID) commonly referred to as the "Bubble Boy Disease". Children diagnosed with SCID are placed in isolation for periods of six months to a year while they undergo treatment. We are seeking volunteers for a special "buddy" program operated within the Toronto Hospital for Sick Children. Prospective volunteers will be required to complete a comprehensive application, orientation, and training process. This is an opportunity to establish a very special on-on-one relationship with a child in need. Your time will brighten a child's day. For further informtion please call 416-964-3434.

back top

It's been an exciting year. I hope you will join me in 2008 as we work to build better lives for children with Primary Immunodeficiency.

Sincerely,

Richard Thompson, CFRE
Executive Director
Canadian Immunodeficiency Society