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Dare For Dystonia with Jase

$44,400 of $100,000 goal

Raised by 461 people in 12 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. 


SO PLEASE - DONATE & SHARE SHARE SHARE!

 
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. 
CAN YOU;
• 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!!

SO PLEASE - DARE WITH JASE, DARE TO SHARE & DONATE TODAY!

#DareForDystonia

#ShareForDystonia

#DystoniaAwareness 

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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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From Jase;

Have been wanting to share some insight on the clinical trials/research papers I did with Westmead Hospital and University of Technology Sydney, so here it is:)

Two separate studies over a 6 months period. One was researching and compiling data on aspects of balance in Dystonia subjects - not a lot of exciting to report on that one, though a study that was necessary to collect more data and understanding toward this dystonic puzzle.. And the other was a bit more guinea pig style - I entered a double blind study with electrodes attached here and there to interact physically but to also record results. The main aim of this one was to fire an electrical current to pass from the rear of my brain where the cerebellum sits, through to the front of my brain - which I've attempted to explain below with my own questions and notes taken throughout the research..

UTS TRIAL:

Before/After videos are set up..

Wires and electrodes are then hooked up to face, neck and hands.

A magnetic field is then fired over the skull (this is separate to the electric current described earlier) to stimulate parts of the brain to record data. When the magnetic field is fired over brain (that you actually feel through your skull into the surface of your brain) it causes your hand and arm to fly upward in the air, kind of freaky but interesting..!

Following this, you sit and have the wire thats connected to your cheek and eyebrow pulsed with an intermittent electric current that causes a muscle contraction/twitch on your face to record responses and collect more data.

Then, this one is demanding, electric bands are strapped around your head and chin, one of them with an ice gel pack, pretty cold, then an attached machine is turned on - this creates a burning, needling itch sensation for a short period, it's not comfortable, but it's fine, the ice pack is there to help with that. The activity performed while this stuff is hooked up: you need to try sit perfectly still for 20 full minutes, watching a dot slowly moving to the left and then slowly to the right, back and forth over and over, the catch with this one: you need to try not move your head to follow the dot, but instead you must imagine the physical left/right movement of your head... takes a lot of concentration and focus to do this - when by default you're already super tired eyed from the fatigue of what the Dystonia does to you each night, then watch a dot move slowly on a screen you feel all of the seconds of that 20 minutes..!

The whole purpose of these sessions - (as the above are all before and after data recording techniques) - Trans Cranial Direct Stimulation (TCDS), is applied. This is a method whereby an electric current is pulsated from the back of your skull, passing through your brain through to the front. The purpose of this, there's a part of your brain called the cerebellum, when the current passes through it, the aim is to manually encourage activation and force stimulation of receptors that are already trying to connect to the cerebellum.
So yeah, we're trying to make a connection between the two which is typically there, but the goal is get it constantly firing and connecting - for why? It's obviously complicated, but the cerebellum is one part of the brain that checks in with your body movements - as in, did my body just move because I commanded my brain to make it move, or did my body just move with no command from me..? - the cerebellum is the "checker" of if this movement was controlled or uncontrolled.. if it's the latter, it's supposed to step in and let another part of the brain know...

By stimulating the neurons in the cerebellum with an electric current (whether you have Dystonia or not, the operating level of your cerebellum can vary high or low in activity/neuron excitement), if neuron excitability is low, a study suggests, and in the attempt of this trial, is to excite those neurons which are then force triggered to message the basal ganglia AND your motor cortex - which in very basic terms are your command/control centers.. see where this is going? These parts of the brain control when you move, but JUST AS IMPORTANTLY, they also control when you DON'T want to move.. they stop you from moving when you command to be still, and this is about you, and everyone else regardless of health condition or Dystonia (right now you think you're being still by doing nothing - this is not the case, the basal ganglia in your brain is working right now on keeping you FROM NOT moving, it's constantly active telling all parts of your body to stay still..! So yeah even when you think you're doing nothing at all, your brain is still actively on the job keeping your shit in check - even if you feel your shit isn't in check;) Gives some insight into how incredible and incomprehensible the activity and abilities the human brain is constantly performing - whether you're on a high frequency or a low frequency your brain is a miraculous powerhouse, that neurologists admit they're far from even two thirds of comprehending and understanding..) but back to where we were before I digressed - This manually applied electric current through the back of the brain to the cerebellum is hoped to create a higher level of performance by the motor cortex and basal ganglia ~ to control or better control, the uncontrolled dystonic contractions/movements though this is very good sounding, and it is, I've explained it quite basically and the trial itself is of course only at a rudimentary observational study stage ~ Trailing this method of treatment is to collect data recorded, in hope to open an avenue of helpful treatment, and in either case the compiled data will keep adding needed information..

Another way they can do this analysis is by splitting your head open and cutting into your brain/cerebellum, but I didn't sign up for that so electric wires on the face will do just fine :)

Now, whether this has any desired results or not is yet to be revealed, it's just experimenting (I've had no change in symptoms). I know it sounds great, but how likely it will effect or control Dystonia symptoms is a different story - it's a long process, lots of time and lots of work to make little steps - I look at it like this, there's so little being done in the Dystonia research space, that anything like this is greatly welcome and at the end of it, there's been more data collected and compiled that will help us toward figuring out this life twisting anomaly. The main research foundation in Australia, 'The Brain Foundation', hasn't performed, unfortunately and at no fault of their own, any Dystonia research programs for the past 3 years. This is due to no funding, I know this as I've had conversations with them about it. This, should give you a pretty clear indication of where Dystonia research is up to presently. So I'm pretty grateful that there are some people out there doing study papers and trials like this - there's at least a bit of something happening. Once I've exhausted what I can do for my health short to medium term, I'd really like, with awareness, acknowledgment and help of wider community, at some point down the track - pending my condition after South Korea Treatment - I want to really focus on getting some research programs and grants up and running for each year. I guess we'll watch this space..

Another long one again sorry, but thanks for reading, and thanking you legends again for the love and support xo
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Update from Jase;

My last update was in December, explaining the possibilities and issues around trying for treatment in South Korea - everything remains the same in those regards.. aside from trying to raise funds for treatment, South Korea is still the most tangible source of help..

There's a lot I could delve into and go over, but I want to at least just share here some of the basics of what's been happening with me.. and I suppose I should also note, that I really do struggle with putting myself out here publicly like I have, I understand I've been proactive in getting it out there for the bigger picture of Dystonia, but it impacts pretty hard mentally and it takes its toll. This aspect is what nobody see's, even those close to me barely see it - how I cope and behave in the face of this is usually a poor indicator of how I'm actually doing a lot of the time (there's obviously many aspects of dystonia that impact mental health, and they're all big issues that take time to go into, I at least want to touch on the subject for the moment).

So there's been positive and negative progress regarding the physical of the dystonia.. it's quite complicated to explain and cover - but basically - we've been upping the dose amount of botulinum toxin at each injection to try stay on top of the aggression of my dystonia, there is good and bad to this. Yes we're seeing more and more stability, but this comes with side effects - injecting a toxin like this into your neck, especially at increasing amounts, starts to deteriorate muscles, muscles that you NEED. But before it even gets to that point, the Botox has a strong impact on its own in disabling muscles - which yes, this is the aim with trying to stay on top of the dystonic muscles that want to keep on contracting - but what needs to be understood also, disregarding my dystonia, is that I need my neck muscles just as much as you do. Our heads weigh 4 to 5 kilograms - that's a weight you never feel because your neck muscles are working just awesomely, even when you're upright and doing nothing at all, your neck muscles are engaged, the only time they're not is when you lay down - as soon as you start knocking out major muscle groups in your neck as I've had to do, supporting your head becomes a daily issue for the first 6 or so weeks of each Botox injection cycle (each injection cycle goes 12 weeks, and repeated every 12 weeks for the rest of your life), these issues range from not being able to swallow properly or breath clearly, to also not being able to support the weight of your own head properly - if my head isn't centered perfectly upright, It's a strain - leaning forward, my head feels like the weight of a watermelon, it feels horrible. When I am laying down at night, if I'm on my left side, I literally cannot lift my head off the pillow - that is not an exaggeration either, the SCM muscle (sternocleidomastoid) we keep pumping Botox into is one of the muscles responsible for lifting this weight. The first night it happened scared the hell out of me, imagine going to lift your head, but nothing happens, it's just a dead weight..! Pretty horrible - and remember this is your head, on your shoulders, not a more inconspicuous body part like your elbow or pinkie finger.. when going through these weak Botox phases it just feels more comfortable to support my head with my hand, my head obviously won't fall off, but I can't support it properly and propping it up with my arm/hand especially when trying to eat at the table is distressing, accompanied with not being able to swallow properly isn't very nice at all, pretty shit actually. There's lots of things, but I'm at a point where I'm becoming uneasy talking about them for fear of sounding like I'm a pedantic whinger or a broken record..

This might seem like some pretty weird "positive" news, but if I pretend those side effects aren't effecting me, and for the periods of the Botox cycle were I'm not experiencing such strong side effects, I'm "visually" looking much better and the reprieve I'm getting is most welcome - it also reflects on how heavy or light my mental mood is as well.

The negative, which unfortunately detracts from the above, and it is pretty sad news - there's also the slightly scarier problem, of what the Botox hasn't been able to help - though it's had an impact on weakening certain muscles and stabilizing me when I'm upright, we haven't been able to properly tame a particular section of dystonia at the rear of my neck that wants to contract my head straight backwards when my head is at rest such as laying down at night for bed or if I want to try rest my head sitting with a headrest - basically I never feel I can rest.. and this one is very distressing and drives anxiety very hard. We've managed to dull it down, but I can still feel it's strength and constant clench it keeps persisting with. Even after months of peak Botox. Every single night since April last year, I've been constantly clenched and gripped on the back of my skull and neck, I don't know how I haven't completely lost it. Yet when I sit up out of bed in the morning, though I feel contorted and in need of grand stretching, I can hardly believe what's happened to me, I can hardly understand it, let alone someone looking at me that can't pick up that there's anything wrong. It's very off putting. I genuinely don't know how it's not driving me insane - you here people say that phrase, but I'm actually experiencing actual insanity every single night, and I'm told by doctors that there's no cure... I don't know how I do it. Some nights I can't do it, some nights it pushes me further than what I can cope with.. but just. Keep on. Dealing.

Yeah it is frustrating in general, but I try to remain positive, I keep working on things - and I don't voice any of this for sympathy, in fact I really struggle with voicing it now - I don't want to appear negative, but if I don't talk or share these things, there's no space for awareness and understanding of a life that dystonia impacts - and if we can't at least get the conversation out there what's the hope in working towards a cure for the thousands more that are suffering this condition - public awareness is one of the first steps in bolstering support for research grants and programs - sharing this stuff on Facebook, social media etc is a bigger deal than what we might first realize...

I know I say this every step of the way, but I really appreciate everyone's support - it means so much, if everyone can share our GoFundMe page, at least from time to time, to crowdfund further and just to help put dystonia on people's radar - whether you know me or not, it really does a lot if you're able to put a small blurb with a little detail on what you've learned or understand about dystonia, something short and simple (not my strength I know ) is 100 times more effective in gaining attention when sharing the GFM link on Facebook, as opposed to just sharing what looks like just another random GFM link - even something as simple as stating that it can happen to anyone at any age of any health, there's no known cause or cure, and it affects more people than you realize - it's creating a connection, a connection that a lot of your friends likely haven't yet seen or heard about.. it really does make a difference - please amigos share it around :)

So much love guys, and thank you for your ongoing support xoxo


PS Happy International Women's Day ✌️
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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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$44,400 of $100,000 goal

Raised by 461 people in 12 months
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