I had a call with ABC journalist Marty Smiley this morning who is interested in covering PFS. To successfully pitch the story, it needs to have local case studies to ensure it’s relevant for an Australian audience.
Having such a reputable media outlet cover this issue could lead to some incredible outcomes for patients like increased regulatory scrutiny, more interest from researchers and further clinical recognition & acceptance.
With so much momentum moving this issue forward, we really need to press our advantage in the next 12-24 months. One way to do that is by capitalising on this opportunity.
If you are an Australian experiencing PFS and are willing to speak on camera about your experience, please send me a private message or reply here.
ABC is the Australian national broadcaster. Huge opportunity for increasing the credibility of PFS patients and informing the medical community. Hats off to @Sugarhouse (again!) for building the charity that paved the way for this.
Opportunities like this don’t come around everyday guys. We really need to capitalize on this. I really hope we can get some courageous volunteers for this.
Don’t let this opportunity fall by the wayside 1nce more like it did 2 years ago when Mitch asked for Australians to step up. Sufferers should be fighting over each other to speak up. I can put on a good accent but doubt it’s convincing enough
If you’re an Australian patient reading this I implore you to consider the following:
Is it worth more to you to avoid the unwarranted feeling of shame or to have the chance to get back your normal existence? You really must ask yourself what is more important. As far as I know there has never been a proper exposé of our condition. This would significantly move our issue into the mainstream and bring forward the day we are out of this mess.
Australian patients, please come forward. This is a huge opportunity.
You won’t be alone - I’ll be telling my story also - and your contribution will have an enormous impact on progressing this disease out of the dark ages.
Cone on Aussies what are u thinking of!!! This is about a horrible drug and saving lives. The difference between someone seeing the article or not could be down to you. Make a difference and stand tall do the right thing
If you do this you will look back at yourself with pride one day for having significantly contributed to winning back your freedom from this disease. We need recognition. This disease is very likely curable but we each have to take appropriate action to get there.