Our children suffer from this hideous disease, CRMO: Chronic Recurrent Multifocal Osteomyelitis! Isaac and Zoe started up this campaign in 2019 to raise awareness about this rare disease and to raise ongoing funds in support of more being done in Australia for CRMO. By way of background, they were both diagnosed at a young age, after years of medical tests and explorations. They endured a great deal during the period of finding a diagnosis before they were finally told by Doctors that they had CRMO, which sadly is mostly diagnosed by way of exclusion! As families, we had no idea of what this disease was or what it was about. Sadly, given it is such a rarely diagnosed illness in Australia, there were (and still are) a lot of questions that were and are unanswered. What we know, is that our children have to endure constant ongoing medical appointments and physical pain, so much so that it prevents them from participating in normal activities and undertaking sport related activities. Children with CRMO undergo regular medical procedures, ongoing injections, treatments and investigations and all without any clear outcome on the benefits/risks of these. There is also little assurance on outcomes as to whether children can go in to 'remission' or if the disease will eventually die out. Trying to maintain positivity and momentum to attend appointments can be very difficult when you cannot provide a 'fix'. Sadly, there is still little known about what triggers a 'flare' and the treatment for it is complex and different for each individual. The disease has no known cure and to date, has had no research in to it in Australia. Having a chronically ill child can be extremely distressing for the child and also for the family involved and places extra pressures on the family including emotional stress and to some extent, isolation. Zoe and Isaac are determined to make a difference and ensure that other children have support and that they can impact the future of how this disease is researched and what treatment options may be available. We are continuing to work closely with RCH to raise funds to establish more support for research to be undertaken to understand more about this illness and how we can support children with it.