Dare For Dystonia with Jase

As many of you know, Jason has been suddenly and unexpectedly diagnosed with Dystonia. This sort of impacting life event could easily make most of us just give up and resign ourselves to a life of pain. However, Jason is a ridiculously unique, resilient, positive person and is not taking this lying down. He would probably hate this being said, but it is genuinely inspiring to watch the way he's dealing with what he's up against. 

There's been an enormous amount of love and care and so many people asking how they can help. He did not want to start this page initially, because he is the sort of person that helps other people. If you're able, please take a moment to get an understanding of our campaign and what the hell Dystonia is...

You are watching a 33 year old Australian man who has been diagnosed with a neurological movement disorder in his cervical spine (the neck) - Cervical Dystonia (CD), a movement disorder that's third most common after Essential Tremor and Parkinson's disease that can effect ANYONE at ANY age. 

Dystonia is an illness which causes sustained or repetitive muscle contractions, spasm movements or abnormal fixed postures, which can cause pain, tremors and other uncontrollable movements - It can affect any part of the body. The symptoms continue 24 hours a day. For Jason, he cannot 100% control his neck muscles from spasming and twisting his head and jaw to the right hand side. It's debilitating and has turned his life upside down in a very short period of time. He has gone from living a happy, healthy life, working 6 days a week, to being unable to work, and even struggling with the most basic of daily activities like eating. 

Jason's most recent visit to his Neurologist has revealed that his CD is much more aggressive than what is typically seen among other patients. 

Despite being the third most diagnosed neurological movement disorder, it's not a condition most of us are at all commonly aware of. People afflicted by it remain behind closed doors. Treatment is lacking and few research programs have been funded to help people suffering from the condition - the cause and cure of dystonia is still unknown at this stage. 

What we are doing:
Among his own struggles and the stigma of spasms, Jase has agreed to share his experience to bring much needed attention to this illness. 
He is helping researchers by signing up to clinical studies and is championing this campaign by reaching out to social forums to get the conversation started.  
This campaign is about raising awareness of an unsung illness, giving a voice to those who are suffering from it, bolstering support for researchers trying to find a solution, a cure, and to provide Jason with much needed treatment. 


Help us get it on the board:
It’s not all about the money. 
Our target is to raise $100K for treatment and care not covered by the Australian health care system AND to receive more than a million shares on facebook.

Finer details:
Each case is profoundly different from the next and therefore requires specialized and often experimental treatment, which is not covered by the Australian health care system. 
The only effective way to find relief is to trial different therapies - available in limited places within Australia and overseas. 
Estimated costs exceed our target. 

By helping Jase, you’ll be helping thousands of others who are also in dire need of more effective treatment. 

Jase: "I've always been focused on getting the most out of life but this has twisted and shaken it all to a pretty scary place. Right now I want to do everything I can to help myself and others."

How you can help:
Donate any spare dollars, whatever you're able, raise awareness and share our campaign. 
• Donate your skills (help our campaign)
• Setup fundraising challenges/events/gigs 
• Help us find in-kind support (know someone who owns a hotel chain? A travel agent who can offer cheaper flights??)
• Help us raise awareness - spread it in clever places to gain attention, to reach far and broad. Know any media guru's? Anyone with a bit of fame to get it on the board?

Where the money goes:
What we do know is that treatment must be highly customized to the needs of each patient. 
Expenses include seeking treatment from;
• International travel for CD specialized treatment. 
USA is first on the list - Pennsylvania, New Mexico, and California. 
Canada to follow - a specialist in Neuroplasticity is a must, based in Toronto. 
South Korea visit is essential also, Jason will be based there for a number of months for daily specialized treatment. 
Combined, these trips/treatments estimated to be in excess of $120,000. 
• Laboratory mineral Analysis.
• Possible surgeries $16,000. 

Where money's been spent so far:
In the space of a short couple of months medical costs have already exceeded $20,000, Including;
• Cranial neuro-muscular dental/jaw treatment (He's wearing a splint to decompress his jaw & skull, must be worn 24 hours a day for at least the next 6 months)
• Neurologists
• Botox injections 
• Functional neurologists (Neuro eye exercises to be completed 8x plus daily)
• Chiropractors
• Neuro-chiropractors
• MRI's
• Full body & neuro dental X-rays
• EEG brain scanning 
• Strict neuro strengthening food program (not inclusive of food - $325 per week on specific supplements)
• Specialist Endodontist
• Behavioral/Functional optometrist 
• ENT specialists
• Osteopaths
• Cranial-Osteopaths
• Physiotherapist 
• Hydrotherapy 
• Neuro-Physiotherapy
• Musculoskeletal therapists
• Exercise Physiologists, and
a slew of other practitioners (sitting at 60 something appointments so far). 
Appointments & treatments are ongoing - some of them in excess of $1000 per 90 minute consult - its early days so these dollar figures aren't slowing up anytime soon - these $20k figures expected to be hit another couple of times again over the coming 12 months alone. 

Additional costs;
• Travel.
• Accommodation.
• To date, out of work for 19 weeks. 
• Clinical psychologist therapy. 

Next big step is getting him over to Pennsylvania asap! This is vital as Jase needs the experts!!






A message from Jason;
(Jason's full story on Update Tab #1)

For friends that know me and for the good people who don't, I need to say how gut wrenching it is for me to share some of the footage in that video. There's a huge amount of anxiety and regretfulness with putting myself out here, and going ahead with this. It feels horrible - and I can't take it back. The decision to do so, it doesn't sit comfortable. But putting my dignity aside, for the greater good, I believe it's the better choice to share. 

I'll jump ahead here, as I understand most readers if you don't know me, It's fair you mightn't get through reading my whole story.. so summary first; 
If there's any excess funds beyond means of supporting needs and treatments of myself, if there's a point where I'm able to turn this around, I will be donating that portion to a dedicated body that solely runs research towards Dystonia (The Brain Foundation) - and I'll again be embarking on my own mission to raise more awareness around this illness. In the meantime, this situation is a real life nightmare - I'm not one for self pity or complaining of my problems. My whole life I've looked after myself and others and I've now been bestowed this wretched hand - and the crazy thing is, it can afflict any one of us, it doesn't discriminate -> as read above, it's third most diagnosed after Parkinson's disease > it's just hidden behind closed doors and not brought to people's attention, it isn't glamorous, there's no high profile celeb's talking about it or being the face for Dystonia. 
We don't know the cause. If we find that we're closer to the cure, or at least provide better care and management - and trust me, other Dystonia sufferers are happy for any glimpse of improvement. I'm setting out to do everything I can to help myself, to get answers, to help anyone else I can in the process, and at the very least raise as much noise and awareness around this hidden illness. Please help me, dare with me.. I can't raise dystonia awareness without you, so please jump on board - do anything you can to help!

The life path I must now follow in order to "live" and fight this condition is starkly different, difficult, and depressing. Emotionally angry and upset, but aside what I'm going through it absolutely breaks my heart that my family see's me like this, and how helpless they feel in that they can't just take it all away.. My mother is helping me for an unknown period of time.
At this stage as I write this I haven't yet seen my father in this form, when I will see him, the thought really crushes me and brings tears to my eyes when I think about it. I guess it's some kind of pride thing, but it really breaks my heart and I don't want Dad to see me like this. There are other agonizing pains physically, socially and mentally, but sharing those I'll leave aside for now. 

I feel terrible about all of this, I never expected to be on this side of a GoFundMe page... but thank you in advance, for anyone's help and support - and thank you for reading this far, it's a long one I know but it's a big deal - ALSO thanks to the people who've helped me get this far - we'll be sure to keep you all updated along the way xoxo.

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Lucy Arnott
Billinudgel NSW

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