Volunteer Board and Dedicated Officers of CFOPN

Carrie Connell
President & Board Member, CFOPN
IFOPA International President Council Ambassador for Canada

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Carrie lives in London, Ontario with her husband and two children. Her youngest child, Brooke, was diagnosed with FOP in 2007 at age six. Soon after they founded the Canadian FOP Network and were joined by other families and friends across Canada. You can reach Carrie at canadianfopnetwork@live.com.

Debbie Dizon
Recording Secretary & Board Member

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Debbie lives in Richmond Hill, Ontario with her husband and seven children.  Her son James was diagnosed with FOP in the summer of 2009 at the age of 6 years old.  Since FOP has entered into her life, she has passionately devoted her time to increasing  awareness of FOP in the community and joined the Canadian FOP Network. You can reach Debbie at d.dizon878@gmail.com.

Kathleen Degenhardt

Social Media Ambassador & Board Member

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Kathleen lives in Goodsoil, Saskatchewan with her parents on their family farm. She was diagnosed with FOP when she was 4. She has taken part in fundraising for the CFOPN with the Munro family for many years. She works from home as a Medical Transcriptionist Healthcare Documentation Specialist. You can reach her at kathleendegenhardt@outlook.com. 

In Memory of  Marin Wallace
Board Member

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Marin was an individual with FOP and a Board Member of CFOPN as well as a blogger and FOP Advocate. Marin participated on FOP panels and presented as well attended education and represented our organization at the Canadian Organization for Rare Diseases conferences and fundraising events. Sadly Marin passed away suddenly in October 2020. She will be missed by everyone who knew her and we thank you for her contributions.

Karen Munro
Vice President & Board Member, CFOPN

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Karen lives in Port Moody, British Columbia with her husband and son Owen.  Her daughter Miranda was diagnosed with FOP in 2007 at age two and sadly passed away in 2020 at the age of 15 years.  Karen remains very much part of our community and continues her involvement with the Canadian FOP Network. Karen is also a lawyer. You can reach Karen at karenednamunro@gmail.com.


Darlene Dooks
Bookkeeper & Board Member

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Darlene lives in London, Ontario with her husband, Robert, and has been neighbours and friends with the Connell family for over 15 years. Darlene learned about FOP when Brooke was diagnosed and has always helped out any way she could, including FOP fundraising events. Darlene is looking forward to getting more involved with CFOPN now that she is retired. Darlene can be reached at Dooks@rogers.com.