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We at CIPO hope you enjoy our Fall newsletter. Read on to find out what we have been doing to support Primary Immune Disease in Canada and beyond.
Support CIPO Now
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CANADIAN PI PATIENT SURVEY! MAKE A DIFFERENCE
Take part in the CIPO patient survey and have your say in PI treatment and services in Canada. We want to hear from you, and each survey will be entered into our prize draw! Take the survey now for your chance to win one of five prizes.
Take the CIPO Patient Survey Now!
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Letter from Our President
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Happy Autumn everyone. I am hoping that this newsletter finds you all reasonably healthy and coping well with the change in weather. This past summer found CIPO National Board members traveling to New Orleans, LA at the biennial conference of our wonderful counterparts in the USA, at the IDF. We found ourselves there along with thousands of immune deficient patients, their caregivers and/or family members and friends. It was an experience like no other and the scope of the meeting and the information received was immense.The volunteerism was astounding and the magnitude of the 3-day event was awe-inspiring to say the least. Many old friends were revisited and new friendships were formed. CIPO can only aspire to hold such a meeting in the future.
If you are a patient, you will soon be receiving a survey which will help us here at CIPO find out more about PI in Canada. All across Canada this year, we have reached out to patients and medical professionals alike and we are continuing to plan more meetings in the near future. Keep an eye on our website and Facebook page to see if there will be an event near you. CIPO continues to grow with the help of our volunteers and we hope to see you soon.
We at CIPO wish you a warm and healthy wintery season. Stay warm!
Libby Tough, President, CIPO National
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The CIPO National Board welcomes Christine Duncan as Ontario Chapter Chair. A CVID patient herself, Christine is a nurse educator currently residing in Toronto. Christine has lived and worked in many parts of the province, including Thunder Bay and Sarnia.
CIPO says goodbye to two longstanding board members. Michael Whelan, Megan Harris and Suzanne Turgeon, who have served CIPO faithfully, have resigned for personal reasons . They will be sorely missed.
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| Members of CIPO Manitoba at the Manitoba Legislature |
Manitoba
On May 15, 2015 members of CIPO Manitoba attended the Manitoba legislature to hear a Statement to the Members which was presented by Mr Dave Gaudreau, MLA for St Norbert. The purpose of the Statement to the Members was to bring awareness about Primary Immunodeficiency and the work of CIPO in the province. We hope to accomplish similar work in all legislative assemblies across Canada. Watch this space for future provincial advocacy work.
Ontario
In our last newsletter we brought you news of Whitney's work at Queen's park in regard to the Pay-for-Plasma legislation, well the story continues. Whitney was invited to speak in Washington D.C. at the Plasma Protein Therapeutics Association (PPTA) annual forum on the topic. It was quite an adventure, lobbyists, industry and patient groups from all over the world were there to represent plasma interests. CIPO will continue to work for patient access to product in Canada.
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Patients at a CIPO Education Event in Metrotown in May
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Upcoming Events
Here at CIPO we are busy planning our 2016 events. New events will be posted soon.
Past Events
University of Calgary - October 17th, 2015 - Calgary, AB
Patient Education Event, Waterloo Delta - June 4th - Waterloo, ON
APIQ Education Day, Holiday Inn Longeuil, September 17th - Longeuil, PQ
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CIPO has been busy! In BC, a support group has started in Vancouver. They had their first meeting and plan to meet monthly. A Vernon support group also plans to start meeting. Anyone interested should contact Wendy Chandler, [email protected] for further information. Plans for a support group in Toronto are underway. If you are interested please contact Christine Duncan, [email protected] and indicate your interest!
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IDF Biennial Conference - New Orleans, LA - June 23-25
CIPO had a wonderful time at the IDF, along with 1300 PI patients, caregivers, family and friends. There were sessions for everybody with experts from across the US. CIPO co-hosted a Canadian reception with our friends from Immunodeficiency Canada for the small but mighty group that represented the North. The Mardi Gras theme was fun and New Orleans was hot, hot, hot!
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| Whitney (c) with plasma centre staff. |
While in Washington D.C., Whitney was invited to tour a plasma donation centre. The staff at the centre walked her through what happens from when a donor walks in the door, the screening process, how the plasma is collected, and how it is processed. As a patient, this experience was amazing! Thousands of people are involved and it was a privilege to be able to see the process from donation to product. Thank you Grifols for making this possible.
Learn more about the plasma process
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We need your help.
As a volunteer-run organization, we are always looking for
volunteers. If you are interested in volunteering with CIPO, please contact us at [email protected]
We need your support.
As a patient organization we work for you. We are a patient organization made of patients and family members. To continue making a difference in the care and treatment of PI in Canada, we rely on donations from people like you. Every dollar counts.
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We hope you have enjoyed this new online version of our newsletter. We value your feedback, so please tell us your thoughts. Thank you for your generous support. Without it we could not continue to do the work that is so needed in the PI community.
Sincerely,
Whitney Goulstone
Communications Director, CIPO National
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