Our Mission Statement
Our goal is to find a cure for FOP, raise awareness of this disease and raise money for Jarvis’ future. Over the next couple of years we are raising money to:
- Get our family to Manchester for the International FOP Conference in May 2014 (http://www.fopaction.co.uk/). Here, Jarvis will be seen by the world leading experts in FOP, our family will also have the opportunity to meet other people who have FOP. With approximately only 13 in Australasia, this is quite difficult to establish a large support network. We can also gain a better understanding of how to handle this condition. How great it would be to take a big fat cheque to show we’re helping FOP Research.
- Provide ongoing donations to FOP research both in the US and UK.
- A wheelchair – while it is a way off before Jarvis will be in a wheelchair (hopefully) they are very expensive
- Medical expenses for any future treatments that may be devised in order to combat this condition
How can you help?
Direct Deposit to Hope for Jarvis
Account name: Hope for Jarvis – Help Find a Cure for FOP
Account no: 396074785
Or use our GiveNow page:
Give us your time – feel like helping out at a fundraising event? Please contact firstname.lastname@example.org
Spread the word– do you know someone who can help us? Do you know someone who could have FOP? To operate on a patient with FOP could be detrimental. Look out for the warning sign – malformed big toes!
Manchester Trip Update
Thanks to you all, we were able to attend the FOP Family Conference in Manchester, UK. It was a fantastic experience for our whole family and we left being filled with hope that there will be a cure and with gratitude for meeting such wonderful people.
We had our consultation with Dr Kaplan on Friday 16 May. The moment we walked in we immediately felt at ease. It was quite overwhelming to meet the team who will one day cure our son. We spent some time going through all the questions we had regarding FOP and Dr Kaplan played with Jarvis assessing his movement.
Saturday 17 May was the conference and Jarvis played with the other kids at the creche so Damien and I could concentrate on the presentations. Sometimes information seemed very scientific but it had to be. Damien & I need to become experts in genetics and what can and can’t happen to Jarvis medically because unfortunately the knowledge here in Australia is very limited as to how to treat FOP.
We learnt about the upcoming drug trials that will be conducted later in the year, however these will most likely only apply to adults as it stops all bone growth. It is still in it’s early stages but not suitable for growing bodies like Jarvis.
We did see however, that every FOP case is different. The acceleration of the condition is different in every person depending on their circumstances, had they had falls,immunisations, operations etc. And some were either not that affected just because. We can see now why it’s so hard for them to find a cure.
We had the opportunity to talk to other families, those who’s children had FOP and those who had it. This session was invaluable. Getting ideas on how we handle things when Jarvis has a flare up, what he needs from us whilst growing up, and how we can cope as parents was very helpful.
Those we met with FOP were inspirational to say the least. Enjoying life to the fullest and also full of hope for a cure. We made some great friendships along the way.
We are proud to say we have donated $35,000 of fundraising money to FOP UK!! As they have no government funding it has helped them a lot (not as much as we had hope with the exchange rate)
We offered Dr Kaplan the other half of what we had raised for research. He came back to us the next day and asked us to use that money to set up FOP Australasia. We do not have a coordinated community here in Australia so we need a presence here for when drug trials start and hopefully this will lead to researchers in Australia joining in the fight to cure FOP. This is our mission that lies ahead.
We came away with a lot of information and comfort in the fact that those researching on the other side of the world, those working out of Oxford University and Dr Kaplan’s team in the US, genuinely care about finding a cure. Dr Kaplan’s team have dedicated over 20 years of their lives to finding a cure and I am confident that with a collaborative international approach, a cure will be found.
Where to from here: Life goes on. FOP is a part of our lives but it’s not our life, and I believe, to an extent, we have accepted this now. We want Jarvis to grow up a strong, motivated, positive individual like those we have met. We want to give him the tools to live as full a life as possible, knowing there will be some limitations along the way. For Damien and I, its about finding the balance with protecting him and allowing him to grow and develop into the fantastic man we know he will be. Jarvis’ brain will not be affected. For those that know him, he’s already gifted. We need to nurture this, focus him on the things that will matter in his life and incorporate that into our daily lives of working, spending time with friends and family and making time for each other.
FOP Australasia is where we will once again call on your help. Help to promote us, help fund us but most of all help us raise FOP awareness. I’ll keep you updated on our status as we are only starting out and have a long, long way to go – but with your support we’ll do it. I believe there is someone out there with the passion, like Dr Kaplan’s team, to find a cure for this disease – we just need to find them.
Thank you for allowing us this experience and for your continued support and sharing our message. Without you, none of this would have been possible. We are truly grateful.
Damien,Lara and especially our beautiful boy Jarvis