Dare For Dystonia with Jase

$43,751 of $100,000 goal

Raised by 450 people in 8 months
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 $50,000. 
• 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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Hey All. A delayed update, though better late than never! $7000 was raised at the Dystonic Blues fundraiser two days before Xmas!!!! We are so thrilled. An amazing amount of locals donated everything from sausages to ice and portaloos! Not to mention the incredible music. We all danced till the wee hours of the morning. Very impressed by what a small group of humans can do!

We’ve also still been receiving generous donations in this page and again we want to thank you so much for staying plugged in and helping Jase out. You’re a legend!

Wishing you a great 2018 and I’ll keep you in the loop with next steps on the journey of Jase ;)

Big love, Lucy
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Hello lovely and wonderful people,

It’s just a couple days from Christmas and I personally want to thank each and every one of you for your incredible generosity. It’s pretty amazing to have got our figures up to almost $40,000 and we couldn’t have done it with out you. What’s also quite incredible is that more than half of these donations are from people Jase hasn’t ever met before. Every tiny contribution has and does help, sometimes even beyond the Finacial side, but just to know people care and want to support Jase. We are getting closer to getting him to South Korea, one dollar, one heart felt connection, at a time.
Today we have our fundraiser ‘The Dystonic Blues’, where we will enjoy awesome music and a mini valley festival with everyone donating their musical skills, time and more. Feeling grateful for this community event coming together so beautifully and with huge thanks to the powerhouse Crystal Lenanne for her compassionate heart and incredibly savvy organisational skills!

We send mega blessings to you and your families during this Christmas time. Again Thankyou Thankyou Thankyou, we are so grateful.

Big love from Us xxx
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Some big news update here, from Jase;


This is the latest..
I've finally had proper correspondence with Dr Young Jun Lee in South Korea. To be honest it rocked me a bit, and at first I needed time just to digest the situation.. Plus it was an emotional email to read, for a couple of reasons. First, it's very positive and promising, it's hard to explain the emotion and how upsetting it is to read such an email, it mostly comes back to hope. After enduring what I've had to go through, and what lie ahead re dystonia life, hope has a whole new level of meaning to it. A real possible hope at a chance to be put right - the idea and hope of getting better upsets me more emotionally than the idea of the current prognosis, which might sound strange because the prognosis is obviously much worse, but I feel numb inside and shut down to that life. Treatment in South Korea, is the biggest thing in my life right now. This guy does some amazing work and has largely very good outcomes. If you read his work or watch any of his videos it's very uplifting and promising - the week I was down at University of Technology Sydney for the Dystonia trial, I cried in public on a lunch break watching one of his videos. That wasn't even about hope for myself, just seeing in the video what the girl with dystonia had been going through to the benefits and "normal" she was receiving through treatment - if you watch, you'd be extremely surprised and impressed with the work, you'd want me on the next flight over there. Though there's other factors that weigh in, and as positive as it is, there's of course the reality that it may not help me.

These are his stats:

Typical treatment time for patients is 3months (60%), excess of 4months (30%). Only 10% are treated within 2months or less.

Treatment success: Their stats over 10 year period say 85% success rate - this is obviously very promising - and you're probably wondering like I have been for months "does that mean cured?", yes they're saying full recovery - IF the symptoms of my dystonia are treatable by his methods.. in my situation I need to stay rational and understand that doing this treatment may not help me (of course though I will remain positive, that's apart of the healing process/crisis).

This is the link to his website, if you'd like to understand his treatment methods. It's a very informative site and all info neatly laid out - http://www.fcstnet.com/?ckattempt=1

That's the good side of the news.

This is the bad side:

The hard part of the email to get around, was the price tag that comes with this. As stated here on the GFM page, treatment over there is ongoing from a couple to many months, lots of hard work, and mental battles. What we stated on the GoFundMe page that's incorrect is the cost. It was far too conservative. I estimated an excess of $10,000 for South Korea treatment, my honest expectation at most was $15k to $20k tops. It doesn't just max over this figure - it looks to be triple at this stage: For 3 months treatment including flights, accommodation etc it will cost $60,000.

Each preceding month of treatment from there out is $10,000 per month.
I'm going there under the understanding I could be there for 6 months, this will be $90,000. These figures are also dependent on the strength/weakness of the Australian dollar as it's charged in USD.

Where to from here?

Well, trying to raise the funds first!
In so far as treatment goes, it has to be timed with my Botulinum Toxin injections. As in I need to be full dystonia symptoms when I'm getting first consult and assessment with Dr Lee, and for the preceding treatment times for X amount of months.

This means a few things.

First thing, it obviously means I need to skip my Botox injections, which I'm actually not ready to do for a few reasons:
We're still in early stages of this therapy, we're still in trial and error stage but we are making progress. I don't want to live on Botox but if all else fails, I will need to, and we've vested a lot into treatment so far and walking out on my Neurologist who I believe is doing the best job he can is not a smart move to do just yet.
Another reason: I can still feel right now, on my third round of injections, peak Botox, the strength, power and constant hold that the dystonia possesses and wants to inflict. It still torments me, every night and morning is worst, depending on amount of rest or activity I have, it's complicated - (having me explain clearly how the nuances of a neurological condition behaves is unfair, difficult, and beyond me. I know I do a pretty good job at (over) explaining and describing things, but this neurological fecker is something else). But as "stable" of a condition I'm experiencing at the moment, I'm genuinely fucking scared to go through the nightmare of full symptoms unrestrained dystonia - I suffer every single night with full Botox as it is.

As you're well aware, this is all quite private stuff. What I'm sharing is pretty sensitive. And as you know none of this is really anyone's business - I'm sure people can imagine and understand that it's more than reasonable to not be public with a situation like this. The mental ramifications are no joke - I'm feeling them, have been from the start, I can't understate the weight of them. Every single night for me is fucked, physically through my neck and back of skull, to mental torment on the inside. Feeling shit about things on top of what's happening to me is pretty fucked up and just wrong - but that's the really sad truth about how I'm going through life at the moment, the months passing, mentally, are shit - just to be open. This isn't a pity cry. It's an inside look at current circumstances - most importantly it helps create understanding that otherwise wasn't there, not just for myself suffering, but also for other dystonia patients suffering. It would also be pretty bloody hard to do a fundraiser without letting people know what's happened.

Which brings me to this post - I'm also sharing this so you have a clear understanding of what I'm up against. I'm kind of feeling more ok with asking for help, just. Or at least my attitude towards it is changed a bit. I still don't like doing it, I still feel shit for asking it, but at this point of the journey with that big hit price tag it obviously changes things. The gesture alone means more to me than any dollar value that's put on it - people that know me well understand this. I still feel uncomfortable about it and I struggle to accept it and be ok with it all.. but working past myself, it's really beautiful and the care and support from you helps mentally as much as it does financially. Every little contribution makes the difference and has made possible what we've been able to raise so for - your help really is making an amazing difference, this would be so much worse without your help.

I hate that this is the long process that it is, but some perspective here helps - keep in mind for a lot of us it's not unusual to book a holiday destination in advance over a 12 month period - I obviously don't need to say, but this isn't a holiday destination, it looks to be the most pivotal point in time that can effect the rest of my life.

Thank you for reading - it's a long one I know, but one of the most important so far - please continue to share, please continue to be cool and generous in life like you have been to me x
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News Flash:

September is Dystonia awareness month;
Jase has been pretty consumed of late but to help get the word out there he's recently spent some time talking to Jo Abi from Nine/9Honey about his story so far. The resulting article is attached below, please have a read and give it a share :)

And with great gratitude we'd both like to say thank you for the continued care and support from you wonderful folks, and all the recent donors getting on board too. Thanks for caring ❤ costs are continuing to mount up for Jase. To date it's cost him $33,797. With some Neuro Therapy planned in Sydney ($3200), which may or may not help, along with other ongoing treatments, this figure will be above $42,000 before the end of the year and before factoring in overseas treatment in South Korea etc. Which is were he's focused on making his next big step, hopefully by December/January. Treatment there is hard work and ongoing, anywhere from 2 months to 12 months is typical. Results vary, but it's a necessary step to make on this Dystonian journey.

Jason has also continued with supporting study programs, and has signed up to a second clinical research trial for University of Technology Sydney. The first one is going well (testing dystonia patients for any vestibular imbalances, just one aspect of many to compile and review), this will continue over the coming months. The second trial signed up for is Transcranial Magnetic Stimulation (TMS), this will be conducted at the University and each part of the trial is done over the course of a week.

It'd be nice to take this moment to give thanks to a practitioner giving Jason a helping hand by performing ongoing chiropractic therapy as her contribution of help, Brooke Wilcher, from 'Healing Wave' has provided Jase with appointments free of charge since July :) as you can see it all adds up and any help is greatly appreciated, thanks so much Brooke!

While we do have your attention, and being Dystonia awareness month, it'd be rad if we could please ask to have this GoFundMe page shared (if you have time please also add a little blurb with anything you've come to understand about dystonia or what we're trying to achieve) if you're able, to help ease mounting medical costs, and to keep getting the word out there --> give this condition the public profile it deserves and work towards a cure and better treatment!

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Raised by 450 people in 8 months
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