In Australia's diverse charity sector, there are thousands of fantastic stories about the impact charities have on their communities.

We recently spoke with FOP Australia about supporting a rare disease, the rewarding nature of charity work and the process of setting up a new charity.

What does your charity do?

FOP Australia is a national organisation established to support people living with Fibrodysplasia Ossificans Progressiva (FOP) and their fight to find a cure for this devastating disease. FOP is one of the rarest, most disabling genetic conditions known to medicine, causing bone to form in muscles (and other soft tissue) leading to ongoing and permanent restriction of movement.

It is a progressive disease and there is no cure. There are 17 people living with FOP in Australia.

We aim to link them together and develop a supportive community, and to link the clinicians involved in their care together with the international leaders in FOP research and care. We also support the international research effort to understand this mysterious disease and identify effective treatments.

What is the most rewarding part?

For people living with a rare disease, finding that there are people across Australia who care enough to donate money or join an event means a lot. FOP Australia has already made a significant contribution to the international research effort, helping ground-breaking research projects and testing potential treatments in a laboratory setting.

We have also celebrated together as the first major clinical trial for a FOP therapy started in 2017, and enrolled the first Australian patient in 2018!

One of the most rewarding things that we have noticed is that Australians with FOP are using our online platforms to communicate with each other more often. Supportive links are being strengthened and are growing organically through these platforms between people that otherwise would be limited in their ability to connect with others living with FOP.

What is the biggest challenge faced by your charity?

There are many challenges that come with running a charity to support people with a rare disease. To start with… it’s rare! So we started with a tiny group of volunteers, a small supporter base, and a small amount of funds. We also face other challenges that are directly due to other characteristics of FOP. For example, our small group of adults with FOP have impaired mobility which restricts their life in many ways, including transport access and financial independence.

All of these things make it harder for many members of our community to actively engage in setting up and running a charity. But these challenges also remind us how important it is to give Australian FOP patients a voice, and to fight this battle for a cure.

How did you manage the process of setting up a new charity? What did you find most challenging?

We started with a group of people scattered across Australia who had nothing in common except a completely random gene mutation, and a strong motivation to stop this devastating disease. Several families had been interested in setting up a national organisation for FOP in Australia, but as none of us had experience running a charity we all had to learn about the process together.

Even steps that are probably easy for experienced boards were major achievements for us - establishing our constitution, developing our online resources, holding our first annual general meeting, co-ordinating our first fundraising event, producing our first piece of merchandise, developing promotional materials to raise awareness – each of these has been a milestone for our small group.

We had to find patient sources of advice and experience, and reliable (but inexpensive!) resources, such as the ACNC website.

FOP Australia is still a work in progress, but we have learnt to celebrate each small victory and help each other through each challenge. We have a long way to go to achieve the potential for a national organisation to help people living with FOP, and their fight for a cure.

Find out more about FOP Australia on their website, or via their social media channels:

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