Dedicated to raising awareness and research funds for a rare bone disease called Fibrodysplasia Ossificans Progressiva (FOP).
"Change my Life" inspirational video for researchers & supporters
Thank you to FOP France for loaning us this beautifully done awareness video clip. (Subtitles)
Newmarket Ride to Cure FOP September 16, 2017 www.ridetocurefop.com
Thanks to the generosity of friends, family, and countless supporters, we have raised approximately $129,000 all six years combined.
What is Fibrodysplasia Ossificans Progressiva (FOP)?
FOP turns children into human statues: a healthy mind locked inside a frozen body. It is an ultra-rare orphan disease which progressively turns muscles and connective tissue to bone, permanently fusing their joints and causing immobility. The malformed big toes and presentation of mysterious swellings and/or stiffness are easily identified signs but often missed due to lack of awareness.
There are new research initiatives on the horizon for fibrodysplasia ossificans progressiva and trial preparations have begun and this research will impact other more common medical conditions that affect much larger groups of people. Researchers are also looking at what positive impact FOP research/treatments may have for people with childhood brain cancer, osteoporosis, chronic anemia, stem cell therapy, atherosclerosis, vascular calcification and heterotopic ossification experienced by wounded soldiers and a percentage of hip surgery patients.
So please help, because the hope of children and adults with FOP rests with people like you, people who care.
Phase 2 Part A Open Label Extension Trial of Palovarotene for Treatment of Patients with Fibrodysplasia Ossificans Progressiva Continues Positive Trends
Sault Ste Marie 5k Run/Walk for FOP Saturday August 26, 2017
CFOPN Annual General Meeting
Date: Sunday, December 17, 2017
Time: 3pm Eastern Time
Place: 101 Brixham Cr, London, ON
RSVP: If you are interested in attending this meeting, please email Canadianfopnetwork@live.com at least one week prior to the meeting.
The AGM is a meeting of the directors and members of CFOPN, required by law to be held each calendar year. General business of the charity is discussed and the financial report and audit are review before being posted on the website.
CFOPN Funding for 2017
Thank you everyone for all your hard work supporting our shared mission of finding a cure for FOP. This was a big year and we are excited to share that we were able to fund $27,000 for FOP research at the U of Alberta, we hosted a Canadian FOP Conference, bringing Canadian patients and FOP specialists together, and have just made a $70,000 USD donation to U of Penn via the Ian Cali Endowment Fund for FOP research
Brooke Connell Golf Tournament
Thank you to our sponsors and everyone who came out to support the Brooke Connell Charity Golf Tournament at Firerock on September 9th! It was a beautiful day and we raised $11,000.00 for CFOPN! Brooke got to drive a golf cart for the first time 😀 so was an eventful, fun day for all who participated. Cruise raffle is in support of this event and is expected to raise an additional $8,000. Draw on Oct 20th at Mustang Sally's!
Calgary Ride to Cure FOP