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.
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 $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.
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 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! 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 email@example.com.
4th Annual Calgary Ride to Cure FOP 2014 Date coming soon.....
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 firstname.lastname@example.org
On April 23, 2006 the FOP gene was discovered by researchers at the University of Pennsylvania School of Medicine. Please help us celebrate the day that altered the course of research by helping raise awareness and/or hosting a fundraising event or making a donation.
Speed Dating for FOP!
April 25th, 6-8 p.m. at The Spoke Club, 600 King St. W. Toronto. $40 Tickets available at Socialite.ca.
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