Please take a minute and read our newsletter to find out what is happening in the PI Community across Canada.




Thank you for your interest in our newsletter. Please take a minute to read about all the exciting news taking place in the primary immunodeficiency community across Canada. 

Please remember to let us know about any changes to addresses or email, so that you can continue to receive news about the PI community around Canada.

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Letter from our President

Happy New Year!  CIPO would like to wish all of our members a safe and healthy, 2018.

Looking back on 2017, there is so much to be thankful for. We launched our new website, a Peer Support Program, held many successful patient education days, advocated for primary immunodeficiency patients across the country and we recognized CIPO's 20th Anniversary with a fundraising Gala.  We grew as an organization, welcoming new members to our organization from across Canada. We also welcomed two new members to our National Board of Directors: Elizabeth Doherty and Judith Mailly-MacDougall. 

Looking forward to 2018, I am excited to see what the next 20 years may bring. CIPO has exciting plans with new support groups starting in 3 chapters this winter, with 3 more following soon, and 6 patient education events being planned across 4 chapters.   

Without our members, CIPO would not be where we are today. I would I like to take a moment and thank the CIPO Board of Directors and Whitney Goulstone - Executive Director, for all of their continuous hard work and dedication.  It is truly appreciated.  

Wishing you all the best,

Erin Harder
President, CIPO National


Comings & Goings

CIPO would like to announce some new faces to our National Board of Directors. Elizabeth Doherty and Judith Mailly-MacDougall, representing Atlantic Canada and Eastern Ontario/Quebec. 
Judith Mailly-MacDougall
Judith Mailly-MacDougall has been an APIQ (CIPO's Quebec sister chapter) boar d member for the past 3 years. She is a mother of 4 children, 2 of whom have been diagnosed with a primary immunodeficiency. She teaches business administration at a college in Gatineau, and is
 studying to become a certified Child Life Specialist to assist families and children cope with the challenges of hospitalizations, disabilities and disease. Welcome Judith!

Elizabeth Doherty lives in Fredicton, NB and comes from an advocacy background and is affiliated with the NB Lung Association and the Canadian Lung Association. Prior to her PI diagnosis in 2014, Liz would spend over half of the year in the hospital and her young son would refer to the hospital as "Mommy's house". Liz is keen to get things going in the Maritimes, hooray!

While we welcomed two new board members, we did say goodbye to one as well. Sylvie Matthews resigned from the Board of Directors. As Director for Manitoba, Sylvie always brought great insight and energy to every CIPO occasion and she will be missed. Best of luck to you and your beautiful family Sylvie! We hope to see you at the next Winnipeg event. 

Advocacy

Canadian Blood Services Transition

In November 2017, Canadian Blood Services announced changes which affected immunoglobulin products it would carry for the 2018-2021 period. CIPO has released two statements updating our members on these changes. We will continue to release statements monthly until the changes are complete. If you have any concerns, please contact your health care provider. CIPO will continue to work with Canadian Blood Services, manufacturers, suppliers, health care providers, blood banks and other patient organizations to ensure the safest and smoothest transition possible. 


CIPO Reads Statement at CBS Board Meeting

CIPO Executive Director, Whitney Goulstone, read a statement on behalf of primary immunodeficiency patients at the Canadian Blood Services open board meeting in Ottawa on December 7th, 2017. The statement was in reaction to the recent changes that CBS has made to immunoglobulin therapy in Canada. 

CIPO Statement to CBS Board

Paid Plasma 

CIPO continues to advocate against the banning of compensation for plasma donations in Canada. This month, we met with the BC Green party to discuss this issue. We will also be meeting with the BC Liberal party and members of the Ministry of Health. Please visit our website to read more about the issues surrounding paid plasma.



Events
Upcoming Events

This year CIPO will be running a number of exciting patient events. Including patient education days and family picnics. We are still planning the details and will announce exact dates and locations soon. Check our website for further details soon!   
  • London - Patient Education Day - April
  • Edmonton - Patient Education Day - May
  • Kelowna - Patient Education Day - May
  • Winnipeg  - Family Picnic - June
  • Calgary - Family Picnic- September
  • Halifax - Patient Education Day - September
  • Ottawa - Patient Education Day - October

 
CIPO member Brenda Henderson and friend
CIPO Celebrates 20 Years in Zebra Style
 
CIPO celebrated it's 20th Anniversary with a fundraiser gala in Toronto at the Islington Golf Club on November 17th. It was a fabulous "zebra" evening where we looked back on the history of CIPO in Canada, celebrated our volunteers and members, and awarded those in our community.

CIPO volunteer Tonya Leblond and mom
90 members, volunteers, industry supporters, physicians and nurses 
gathered to support celebrate and raise funds for the Canadian primary immunodeficiency community. The group was entertained by fabulous music by and a wonderful keynote address by Dr. Brian Goldman. 

We also honoured members of the PI commun
ity with CIPO's first Excellence Awards. Congratulations to the awar d winners: Dr. Bruce Ritchie, Noor Nongfei Zhu, Jacques Dagnault, and Bryan Corry. We were very happy to have honoured our past board member Michael Whelan with an award in his name.

A special thank you to all of our volunteers who helped make the evening a success, and members who came out to join us! 

Programs
Support Groups

Support groups for patients will be starting up in this winter in Winnipeg, Ottawa, and Toronto. Plans for Halifax, Calgary, Edmonton and North York support groups are underway. 

  • Vancouver - there are currently 2 Vancouver support groups running. Please contact Wendy Chandler for more information at [email protected]
  • Vernon - for more information on the Vernon and area meet-up, please contact Wendy at [email protected]
  • Winnipeg - Tuesday, February 20th at Pembina Trail Library 6:30pm-8pm please contact Erin Harder for more information at [email protected]
Peer Support Program

The Peer Support Program has been launched and has already begun to connect patients and caregivers in need of extra support to trained peer coaches. If you are newly diagnosed or feeling a little overwhelmed, CIPO's peer support program is here for you - you are not alone! This program is 100% confidential. Contact [email protected] for more information.

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. 


We hope you have enjoyed this 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
Executive Director, CIPO National

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