OUR MISSION

To increase awareness and fund research to find disease modifying therapies and eventually a cure for kids and adults with Fibrodysplasia Ossificans Progressiva (FOP).

Current Events

3rd Annual London Ride to Cure FOP
Saturday, July 19, 2014

Thank you so much to everyone who supported this event last year making it bigger and even better than 2012! We had amazing volunteers, sponsors and participants. Friends, family and our community really got behind this grass-roots event and helped us raise $26,000. As one participant put it "There was an amazing sense of community at this event". This event is hosted in honour Brooke Connell and others afflicted with FOP to further new directions of research. Our site at www.londonridetocurefop.com is currently asleep and we will activate it by April 2014. If you would like to contact someone about this event in the meantime, please contact Carrie at canadianfopnetwork@live.com.

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3rd Annual Sault Ste Marie 5k Run/Walk for FOP
2014 Date TBA

The date hasn't been set for 2014 yet, but stay tuned.  Last year's event attracted over 60 participants and raised almost $4,000.00! Last year they increased participation and increased donations by $2,000.00! The event website www.sooruntocurefop.com will soon be activated for the 2014 event. Hoping to see you all then! If you would like to contact someone about this event in the meantime, please contact Miranda at fopssm@yahoo.ca.

Interview with Ian Brodie http://www.youtube.com/watch?v=eyOznQKOKQM

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5th Annual Stouffville Ride to Cure FOP
Sunday, August 24, 2014

This will be the 5th year that the Herce family have hosted their annual Ride to Cure FOP. Please join them for a their 2014 ride and celebratory BBQ on August 24th, 2014 in the Whitchurch Stouffville area. They were excited to add a walking route to their event last year and it was a big success. Thank you to everyone who joined them in making a difference! The event website at http://www.ridetocurefop.com/ will be activated soon. If you would like to contact someone about this event in the meantime, please contact Valerie at ridetocurefop@gmail.com.

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News & Updates

CORD Rare Disease Day 2014 Conference: Overcoming the Challenges of Rare Disease

When: Monday, March 3, 2014
Where: The Westin Ottawa
On March 3rd, 2014, the 14+ members of the Expert Working Group, after weeks of research, drafting, and debate, will unveil the Framework for the first-ever Canadian Strategy for Rare Diseases.

Rare Diseases Study:

ATTN: Adult patients and parents of children with rare diseases for focus groups to be held in Calgary, Edmonton and Ottawa between February-April. The Center of Genomics and Policy (U. McGill, Montreal) is recruiting patients for a study “Preferences and the Value of Whole-Exome Sequencing as a Diagnostic Tool for Rare Diseases.” It is part of the CARE for RARE project, a pan-Canadian project promoting the use of a new genetic technology for diagnosing rare diseases.

The aim of the study is to explore and understand the perceptions and opinions of patients with rare diseases regarding the value of obtaining a diagnosis. Furthermore, they wish to understand the value of using technologies such as whole-exome sequencing (WES) in providing a clinical diagnosis for patients with rare diseases.

Contact: kathleen.charlebois2@mcgill.ca or 1-855-398-6724 (An honorarium will be provided.)

4th Annual Calgary Ride to Cure FOP -  2014 Date TBA

Watch for the Calgary Ride 2014 date announcement! Pete and Karen hosted their annual “Ride and Walk to Cure FOP” last year on Sunday, July 28, 2013 at Calgary’s Baker Park!  In an effort to do something a little different this year they did a parents vs. kids fundraiser. Pete and Karen had their own Giving Page and Owen and Miranda had theirs.  I think that it was apparent pretty quickly that Owen and Miranda would win the fundraising challenge. Big thanks to everyone who donated and participated and helped us raise an amazing 6,000.00! If you want to get in touch with someone about this event, you can contact Karen directly at karen.munro@shaw.ca

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Learn about FOP online