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 Chair
Hello CIPO members,

The CIPO board wishes you a very Happy and Healthy 2019. Flu and cold season is upon us so this can be a trying time for patients fighting off infections. CIPO is off to a busy and productive 2019. There are Provincial Education Days being planned, Patient Support Groups starting a new year and Peer Support Training to name a few.

Last year we were able to support many members seeking our advice and advocacy.
Two of our board members were able to attend a Grifols Open House in North Carolina where they were able to experience a first hand look at how plasma is produced.

Our busy Executive Director has attended meetings across Canada and been instrumental in producing CIPO's IG Transition report.

CIPO has announced their four Excellence Award winners, c ongratulations to all of you and Thank You so much for all your support for Immune Deficiency patients.

I'm looking forward to meeting newly diagnosed patients and continued contact with patients across Canada.

Wendy Chandler
Chair, CIPO National
Excellence Awards Winners

CIPO is proud to announce the 2018 CIPO Excellence Awards Winners. Congratulations to all of our recipients.

R. Michael Whelan Award - Jean Ko
Jacques Dagnault Award - Kristina Skeries
Excellence in Healthcare Award - Dr. Robert Schellenberg , MD, FRCP, St. Paul's Hospital
Excellence in Nursing Award - Lynda Theoret, R.N., The Ottawa Hospital




Grifols Fractionation Plant

Last October, we were invited to North Carolina to view the Grifols fractionation facility. It was described as an informative tour exploring the major steps in the production of plasma products (like Gammunex) from "vein to vein".

Our first evening after we arrived, we were welcomed at the hotel with a meet and greet reception where we were introduced to our hosts and the other participants from different states. It was explained that our next day would start early and be a busy one. Needless to say, we retired to our rooms early.

At 8am the next day, we boarded a coach that took us into their closest donation centre. Here we were introduced to staff and shown every room in the facility, from the materials storage room to the freezer room where they store the plasma immediately after donation. Then we were taken to the donation area where donors relax while their plasma is extracted. Here we came to understand that because these donors only give plasma, they are able to do so a couple of times in a week. We got to look over all the equipment including an infra red vein detector We got to look over all the equipment including an infra red vein detector that show the vein of the donor, making accessing a vein much easier. As we left the donation centre I was already quite impressed.

Our next stop was just before lunch, when we were taken to the actual fractionation facility. The first site on the property was a large multi floored building where, as it was explained all the plasma is stored at -37C until it is ready to process. We were taken to one of the main buildings where we were hosted by the plant president and all the relevant managers. He introduced us to them and gave a quick talk about what would see that afternoon. Then we were invited to join our hosts for lunch, when many of us grabbed a bite and a manager, and enjoyed conversation surrounding our personal experience using plasma products. This was such a great opportunity to have questions and concerns answered firsthand.

After lunch, we took the long walk to the actual fractionation area where they open the bottles and bags of plasma and process the different products into separate vats. Here I learn first that, different from Americans who use bottles to store plasma, Canada uses bags (much like the rest of the world). But, because Grifols processes at least one batch a week from Canada, they had to install a bag opening machine just for the processing of our plasma. Once we reached the vat area, we were shown a room full of huge vats, full and churning with different plasma factors. It is described as the room where the magic happens. Here the different factors are processed into a paste-like substance. This is reconstituted and bottled at this facility, for shipment. A quick trip to the facility museum ended our visit.

Many thanks to Grifols and our kind host for such an interesting and informative tour.

Christine Duncan
Vice Chair
CIPO and the Emergency Room

For years, CIPO members' have shared negative experiences about going to the ER. This year, CIPO is tackling this issue. 
  • First, we are developing a PI Patient Wallet Card
  • Second, we will be developing Emergency Medicine Guidelines for PI

If you feel that you have special insight, or can assist us in either of these projects, please reach out and let us know. We would also like to thank our friends at Grifols for their contribution to the Patient Wallet Card initiative. 

Events
2019 Events Announced

CIPO is happy to announce that we have Patient Education Events in every chapter this year! Registration will open closer to the date. Be sure to join us.
  • April - Edmonton, AB
  • June - Moncton, NB
  • June - Vancouver, BC
  • September - Toronto, ON
  • September - Montreal, QC
  • October - Winnipeg, MB
Volunteer
Looking to Volunteer? Help CIPO in 2019!

CIPO is looking for dedicated volunteers to join our growing volunteer family. Our volunteers take on roles as patient advocates, help at events, participate in chapter steering committees, or even train to become Peer Support Coaches. There is something for everyone. Reach out today!

In particular, we are looking for volunteers in Atlantic Canada and the Prairies. Is this you?
Support
Need a Little Extra Support?

CIPO runs monthly support groups for patients to get together and talk about issues surrounding their personal experience with PI. Come, share, have a snack and meet some new people who understand. All groups are confidential, safe and non-discriminatory spaces.

  • Vernon - January 16th
  • Ottawa - January 16th
  • Vancouver - January 29th
  • Winnipeg - February 26th
  • Toronto - February - TBA

Check our website for times and locations.



Would you like one-on-one support? Our trained peer support coached are here to help. Email support@cipo.ca  to be connected today.

Thank you

CIPO would like to thank all of our donors and funders from 2018. Without your kindness and generosity, we would not be able to continue to provide our services to the PI community in Canada.


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 info@cipo.ca 
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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