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.
Last year friends, family and our community really got behind this grass-roots event and helped us raise $25,500. As one participant put it "There is 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. We are excited to be joined by Adam & Marin, two young adults living with FOP, and their families!
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 email@example.com.
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 firstname.lastname@example.org.
4th Annual Calgary Ride to Cure FOP Saturday July 26, 2014 Register online at www.walkforfop.com
Pete and Karen are looking forward to hosting their annual “Ride and Walk to Cure FOP” at Calgary’s Baker Park. Big thanks to everyone who donated and participated and helped them raise an amazing 6,000.00! If you want to get in touch with someone about this event, you can contact Karen directly at email@example.com
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)
Froyo 4 FOP - June 7th
Come out and enjoy a sweet treat! A portion of all sales will be donated to Canadian FOP Network www.cfopn.org in honour of Brooke Connell a 13 year old London girl living with a progressive condition that is turning her muscles and connective tissue to bone. (Fibrodyplasia Ossiffican Progressiva - FOP) Saturday, June 7, 2014, 3:3- -6:30 p.m. Kiwi Kraze, 95 Fanshawe Rd. W, London (Corner or Fanshawe/Wonderland)
Learn about FOP online
CFOPN is a member of:
CFOPN, 101 Brixham Cr, London, ON, N6K 1K9 Ph#: 519-641-5742