Dedicated to raising awareness and research funds for a rare bone disease called Fibrodysplasia Ossificans Progressiva (FOP).
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 impacts FOP research/treatments may have for people with childhood brain cancer, osteoporosis, chronic anemia, stem cell therapy, atherosclerosis and vascular calcification and heterotopic ossification experienced by wounded soldiers or a percentage of hip surgery patients.
So please help, because the hope of children/adults with FOP rests with people like you, people who care.
FOP patients from Canada may be considered for enrollment into the Palovarotene Phase 2 clinical trial. However, there are some practical challenges including rigorous travel demands during a flare up that require the patient to arrive at the clinical site, undergo all screening activities, and start receiving the study medication within 7 days of the start of a flare-up. To read more (click here)
London International Airport BBQ
On July 24th London International Airport hosted a BBQ with the proceeds benefiting the Canadian FOP Network! The BBQ was very successful with $700.00 being raised as airline employees, travelers, etc. bought hotdogs and hamburgers. Thanks so muc
Congratulations to everyone who participated and supported this years event! What a success, even with the downpour that lasted the entire day. We are very pleased to let everyone know that you helped us raise over $25,000.00. What an amazing group of friends and family.
Thank you to everyone who came out to participate, volunteer and donated to our annual 5k Run for FOP. They had another fantastic year with $6,000.00 raised, increasing the amount for a third year! If you would like more information about this event, please contact Miranda at email@example.com.
Another successful event for the Herce family & friends who walked and rode in the rain this year at annual Ride to Cure FOP on September 13th, 2014 in Newmarket, ON. Thank you to everyone who joined them in making a difference! If you would like to contact someone about this event in the meantime, please contact Valerie at firstname.lastname@example.org.
4th Annual Calgary Ride to Cure FOP Saturday July 26, 2014 $16,000.00 raised and still trickling in www.walkforfop.com
Karen Munro and Kathleen Degenhardt excitedly announced that this year's funds raised on their FOP walk almost trippled last year's amount of $6,000.00! They had a fantastic day and amazing support. Thanks so much to all who organized, particpated and supported this event.
The Kiwi Kraze Day was a big success thank you to the very hard work of Miss Jane Velocci and her wonderful mother! The Velocci's worked hard to make this a great event, making posters, selling water (it was hot!) and awareness bracelets. All their hard work paid off with lots of information about FOP being shared and $280 raised in donations! Thank you all!
Speed Dating for FOP!
Thank you to Socielite for hosting a speed dating event in April and Marin Wallace for representing the FOP families and being our ambassador at this event. To learn how much was raised and what Marin thought about the evening (click here)
Learn about FOP online
CFOPN is a member of:
CFOPN, 101 Brixham Cr, London, ON, N6K 1K9 Ph#: 519-641-5742