FOP groups are springing up like mushrooms (the good kind)

Posted by Karen - April 10th, 2016

Welcome FOP Australia! The land of kangaroos and koalas is now a country which has its own organization for fibrodysplasia ossificans progressiva. This new group is having an official launch celebration on June 4 in Brisbane, Australia (small bit of trivia – I lived in Brisbane for a year after finishing high school). FOP Aus has been on-line for a few months now, but I think this is its first in-person event. It joins a number of FOP groups in a number of different countries/world areas, including Italy, Netherlands, Germany, Sweden, Canada, the United Kingdom, France, Russia, and probably elsewhere that I just haven’t remembered.

These are the toes of Erin McCloskey (the daughter of my co-blogger, Suzanne), circa age 3.

Those wonky FOP toes – imagine them in Australia… ;-)

 

This is a very good thing – but hey, why? Why not just rely on the USA-located International FOP Association (IFOPA) for everything FOP related? There are a number of reasons.

The first and most obvious is language. Yes, in Australia they do speak English, so this may not be the best example, but in non-English speaking areas, it’s vital that information about FOP and potential treatments be shared in the local language(s). FOP organizations around the world do important work in translating and disseminating information for their members. As we move further into the era of clinical trials for potential FOP medications, this is absolutely crucial to success, especially given the small population of people with FOP (about 1 in 2 million).

Another reason, one which is probably less obvious, is to promote donations to the cause. In some countries, people can get income tax deductions by donating to registered charities, but this is often only applicable to such organizations situated in the home country. Donations to charities outside the country will often not count for a tax deduction. Being able to offer a potential donor a receipt which can be used for tax purposes is a good incentive. In Canada, for example, a donation to the IFOPA won’t help you reduce your tax burden, but if you donate to the Canadian FOP Network, you’re good to go! While I’m not certain on this point, I believe this is also the case for Australia and the UK, at least. In Canada, the CFOPN takes the donation money and provides it to research organizations approved by the Canada Revenue Agency – one such organization is fortunately the University of Pennsylvania, and we simply direct the monies to be paid directly to support the FOP lab.

A third reason is so that national organizations can hold events for members which are closer to home than, say, travelling to the USA. I would venture to guess that many more people in Australia could attend an FOP event such as a conference if they just have to travel a few hours to Brisbane, rather than a full day-plus to the USA. Local is a lot easier, and DEFINITELY a lot cheaper… Plus, some such organizations may want to hold events on a different timetable than the IFOPA does. FOP Italia, for instance, has been hosting annual joint family gathering and research conferences for a number of years now, which is more frequent than the IFOPA does so.

Fortunately, the IFOPA recognizes the significant value in having FOP organizations around the world. The IFOPA supports formation of such groups, and provides a forum for international concerns to be raised and discussed through the International Presidents Council (IPC). In recent times, the IPC has been meeting once a year, and communicating throughout the year via e-mail.

So who will be next? I’m thinking maybe Japan? Apparently there was a good-sized meeting of FOP families recently in Japan – I saw a picture of it – but I confess I have no idea if they have an organized FOP group or not. Anyway, it’s all good.

 

PS1 – Want to buy tickets to the FOP Australia official launch event? Here’s the link:  https://fopaustralia.wordpress.com.

PS2 – To learn more about how people with FOP and their families can get involved in helping FOP research, go to www.ifopa.org

 

 

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