Fundraising for FOP in Canada

Posted by Karen - July 5th, 2015

Summer seems to be the season of choice for fibrodysplasia ossificans progressiva fundraising in Canada. We’ve got 4, count them, FOUR, separate events going on this year. Which is awesome, because as of 2015, the momentum toward a treatment for FOP is full-tilt, and we really, REALLY want to see that continue. If we keep up the fundraising work and support FOP research, it’s not inconceivable that we could have an approved FOP medicine before my daughter Miranda’s 20th birthday (she is 10 years old now), and maybe even well before that. There’s a drug in clinical testing for FOP right now, and I understand there are at least a few more which may get to that point before long.

If you’re thinking about how to divvy up your charitable donation money this year, FOP would love love love to be in the mix. Here are 3 great reasons to donate to an FOP fundraiser:

1. Actual treatments for FOP are on the horizon, and your donation may help us get there. Your donation is going to something concrete, as opposed to a vague pool of money which may or may not result in anything.

2. Money for FOP research is almost entirely from personal donations and family-based fundraising events. Because FOP is so rare, we don’t get the big corporate donations. We need every penny we can get from friends, family and well-wishers.

3. A treatment for FOP may prevent my beautiful, sweet and beloved 10 year old daughter from having to use a wheelchair because her hips are locked with FOP bone, or from having to puree foods because her jaw is fused. But – it’s not just people with FOP who can benefit from an FOP medication – drugs for FOP may lead to new treatments for common conditions such as osteoarthritis, heart valve calcification and ossification following hip replacements and amputations.

So… Let’s say you’re in Canada, and you’d like to know more about one of our fundraisers – luckily you’ve come to the right place! We’d love your donation, but it would also be fun to see you at one of our events.

If you’re in Ontario, there are 3 to choose from…

The 6th annual Newmarket Ride to Cure FOP is the oldest one in Canada. It was founded in honour of Valerie, a young woman with FOP, and it involves a bike ride and walking route on July 11, 2015. The group who hold this event have done some amazing work, raising $115,000 in the first 5 years of the event. To learn more, go to: www.ridetocurefop.com.

The next oldest events are the 4th annual London Ride to Cure FOP, which is going ahead on July 18, 2015, and the 4th Annual Sault Ste Marie 5K Run/Walk for FOP is on August 8, 2015. The London event is in honour of Brooke, a teenage girl with FOP, and Adam and Marin, a young man and a young woman with FOP, and the Soo event is in honour of Ian, a young man with FOP. The websites for these events are: www.londonridetocurefop.com and www.sooruntocurefop.com.

Western Canada has an event as well. We have the August 2, 2015 Walk for FOP in Calgary, Alberta, founded in honour of my daughter Miranda. This will be our 5th such event, but only the second year that we’ve teamed up with the family of Kathleen, a young woman from Saskatchewan who has FOP. Last year we raised close to $17,000, and this year we’d love to see $20,000. In fact, if we raise $20,000, my husband Pete and 13 year old son Owen have pledged to each do 100 burpees! Burpees are FREAKIN’ HARD, people – I would love to see them have to attempt this! To donate to our event, go to:  www.walkforfop.com. A further comment on this year’s event – we also have participants who will be doing the event remotely this year, in Vancouver, BC. Alexandra is a 12 year old girl whose family only found out about her FOP in 2014, and they’ll be doing the event close to home. NOTE – if you want to specifically designate your donation in respect of Miranda, Kathleen or Alexandra, click on “Donate to Participant” on our website and follow the instructions.

Look at this beautiful smile! Please help us get a treatment to stop Miranda's FOP.

Look at this beautiful smile! Please help us get a treatment to stop Miranda’s FOP.

A few closing comments – all funds raised from these events will go to the Canadian FOP Network (www.cfopn.org). The Canadian FOP Network is a registered charity in Canada, meaning that Canadians can get tax receipts for their donations. The CFOPN is small and has no employees and almost no overhead, meaning it is able to support FOP research by providing almost all funds raised directly to FOP labs. To clarify – the CFOPN doesn’t route any funds through the International FOP Association, an American based FOP charity (the IFOPA is a wonderful organization, but Canadian law very strictly regulates where it can send money, and the IFOPA isn’t on the list of approved donees). Also, on a separate note, if you wish to donate to any of these events via cheque rather than on-line, you can certainly do so. This is probably even the preferred method for larger donations (over $100), because credit card website expense fees are pretty high for the bigger donations. Contact each event organizer to see how to donate via cheque made out to: Canadian FOP Network.

Thanks in anticipation for your donations and well-wishes!

 

PS:

1. If you have FOP, are age 15 or older and have a new flare-up on an arm, leg, hip or shoulder, you may be able to participate in the current trial for the potential FOP drug Palovarotene. This requires some short-term travel to one of 3 clinical test sites in San Francisco, Philadelphia or Paris (France), but all travel expenses are paid by Clementia Pharmaceuticals, even if you have special travel needs. For more information, go to: http://www.ifopa.org/drug-development/clementia-palovarotene-clinical-trial.html

2. People with FOP who are over the age of 2 may be able to participate in the FOP Natural History Study, a 3 year study designed to learn more about the progression of FOP – vital knowledge necessary to assess drug efficacy. Again, this study requires short term travel as well, but all travel expenses are paid. To learn more, go to: http://www.ifopa.org/drug-development/clementia-fop-natural-history-study.html

 

 

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