Getting to Brisbane was no mean feat for FOP sufferer Damian Jones, a resident at Banfields in Cowes, but the conference he attended has given hope to FOP sufferers that clinical trials underway may bring some benefits for this rare and to date incurable condition.

Getting to Brisbane was no mean feat for FOP sufferer Damian Jones, a resident at Banfields in Cowes, but the conference he attended has given hope to FOP sufferers that clinical trials underway may bring some benefits for this rare and to date incurable condition.

THE logistics, planning and coordination of a recent six-day trip to Brisbane in early June for Fibrodysplasia Ossifcans Progressiva (FOP) sufferer Damian Jones took many months, but nothing was going to keep him away.
A conference was being held in Brisbane over the June 3 to 5 weekend, with participants from FOP patients, families and the medical and pharmaceutical community in attendance.
Damian is a young man well known in our local community, having been born and bred on Phillip Island, attending Cowes Primary and Newhaven College, and operated the boarding kennels out on the Rhyll Road for many years while he was able to.
But life dealt has dealt him a cruel blow.
He was diagnosed with FOP at a young age, and has now moved into Banfields Aged Care facility, in order to receive the daily care he requires.
FOP is one of the rarest diseases known to the medical world and the only known disease where one body organ turns into another.
It has orphan disease status, and currently there are only 789 known patients worldwide, with 15 in Australia.
A medical team under the stewardship of Professor Matt Brown, has established a Natural History of FOP Clinical Trial site as part of a global effort by Clementia Pharmaceuticals to seek a drug therapy treatment for FOP, so there is hope on the horizon with the trial researching a drug which it is hoped can turn off the gene when an FOP patient has a flare up.
In the past year a patient and family support organisation has also formed – its purpose to support patients, families and doctors managing the disease.
The organisation has made enormous strides in a short time, and has achieved both charity and DGR status.
The conference was told that Clementia Pharmaceuticals will be analysing data from its Phase 2 clinical trial of palovarotene and completing enrolments in its FOP natural history study in the coming months.
Results are expected by the end of 2016 and if the data is supportive, Phase 3, which will include two further trials, one of which will be surgical, will get underway.
Damian was able to attend the conference, hear about the work being undertaken, and take part in the natural history study Clementia is undertaking, thanks to a mammoth effort to get him there.
His wheelchair and hoist left the day before him so they would be in Brisbane when he arrived.
He was picked up from Banfields and taken by ambulance to Essendon airport where he was transferred to a care-flight plane along with his carers, parents Cathy and Howard Jones, and Tracey.
Whilst in Brisbane he had a day at Princess Alexandra hospital where a number of tests were carried out.
Damian’s weekend was taken up with the FOP conference and meeting, and a cocktail party fundraiser was held on the Saturday evening.
This was a great opportunity for this very small group of Australian FOP sufferers and their families to get to know each other better and support one another.
If Clementia can prove that it is effective at a safe level, it is hoped that it will become available to patients including Damian here in Australia.
A highlight of Damian’s trip was meeting up with old school mates and friends, Scott, Wade and Jay Rhodes and their mother Sue, and Lachlan Slater and his family.
If anyone would like to support this small group and help with funding towards the research and trials underway, please go to ‘FOP Australia’ www.fopaustralia.org to donate or become a member.
With the support of members, the group plans to lobby politicians to ensure that if the drug is approved, it be made accessible to all FOP patients here in Australia.