To increase awareness and fund research to find disease modifying therapies and eventually a cure for kids and adults with 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.
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.
Last year's event attracted over 60 participants and raised almost $4,000.00! Participation and donations were increased by $2,000.00! The event website www.sooruntocurefop.com is now online and ready to go, so hope to see you all registering and/or pledging! If you would like to contact someone about this event in the, please contact Miranda at firstname.lastname@example.org.
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 September 13th, 2014 in the Whitchurch Stouffville area. 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 email@example.com.
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.
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
Froyo 4 FOP - June 7th
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 and we will be posting total raised very soon. Stay tuned.
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