The Dystonia Collective
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The Dystonia Collective, is a not-for-profit organisation on a mission to raise Dystonia awareness, research, and support patients in need of treatment.
What is Dystonia?
Dystonia is a movement disorder in which your muscles contract involuntarily, causing repetitive or twisting movements.
The condition can affect one part of your body (focal dystonia), two or more adjacent parts (segmental dystonia) or all parts of your body (generalized dystonia). The muscle spasms can range from mild to severe. They may be painful, and they can have a detrimental impact on one's life.
The cause, and a cure is unknown.
And worst of all, this condition can effect anyone, male or female, at any age, and of any health.
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WHY HAVEN’T I HEARD OF DYSTONIA BEFORE?
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It was only half-way through the last century that dystonia was recognised as a physical (organic) condition (before becoming medically recognised, it was thought by mid century doctors & practitioners that patients had conjured their movements up mentally). Even to this day, dystonia often remains misunderstood, misdiagnosed and therefore mismanaged. Research from the United States indicates that dystonia is as common as multiple sclerosis, and far more prevalent than other rare diseases you may have heard of, such as Motor Neurone Disease. This is mainly due to the lack of public awareness around this devastating disorder.
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Dystonia is no different to cancer in that nobody is immune from becoming diagnosed with it, it does not discriminate...

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To support McKenzie Tamala CLICK HERE   To buy The Dystonic Blues tickets CLICK HERE

NEWS

02.DEC.2020
A Brief update on The Dystonia Collective Events
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The Dystonic Blues Fest charity event, is one that we are very proud of and strive to run annually, this year though, all of us involved need to hit the breather button in 2020, for a magnitude of reasons, a needed break in what would be its fourth year. 

Next year 2021 we’ll be looking to bring the valley vibe bliss back for another solid day of music and mates,
summer sunshine and icey beverages. 

A mini music fundraiser fest that was created from friendship, love, beauty, and heart, for great cause ~ awareness and support.
​An event and day at its core foundation that is still underpinned by those very same things. 
Which is what makes the gig and day that true, unmistakable valley vibe that we all love for friends and folks near and far...

With big hearts, here’s to good energy for The Dystonic Blues Fest #4 and to all areas of 2021 💙
28.JAN.2020
Some Terribly Sad News...
Jason has written a word in remembrance of Ewan Mueck:

​It’s been with shock and sadness in writing this..

A young man, a musical artist, a great human, Ewan Mueck, a fellow legend from our home Valley who played at The Dystonic Blues last month, lead singer and guitarist of Man Cub, tragically passed away late last week.

I’d only met Ewan in person for the first time on the day of the festival. Though through other friends circles known and cherished in high regard, and will be so sorely missed.

The last time I seen him, we were having breakfast the following morning, he was sitting at the end of the table playing the coolest of acoustic tunes, so effortlessly..

And the last contact I had with him, a couple of weeks ago, giving thanks for joining us, and hitting the stage.. his reply was this:

“Yeah brother thanks for having me... It was fun.. The valley needs more events like it...”

Ewan, absolutely, tragically gone too soon ❤️

Our encounter was so recent, and so brief, but I’m grateful for it. Thank you for your support, encouragement, and for sharing your incredible talent to our Valley.

Deep condolences and thoughts of mine go to your family, and friends..
I can only imagine...

Rest peacefully mate, I hope you’re trouble free and going large wherever you are on the other side.
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14.JAN.2020
YOU'RE ALL AMAZING!
ANOTHER beautiful Dystonic Blues Fest, and a wonderbeaut day had by all:)
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​Thank you so much to those that made their way out for it, to the musicians for serving up their sound and passion, and to every other hand on deck helping out on the day - a big job and a big day, made successful by every individual involved!

This year the focus being on young McKenzie Tamala, suffering from Generalised Dystonia, 11 years old and one of the worst cases in Australia ~ in desperate need of a larger disability van to fit the growing girl into ~ while for most of us a vehicle upgrade can be a necessity for a growing family, this van for them is not only necessary, but it is crucial for Mckenzie and her mother to maintain access to simple life basics we can tend to take for granted but more importantly for all levels of medical services and emergencies that she constantly requires, it is quite literally their lifeline. Helping them attain it has been a paramount objective for The Dystonia Collective, their lives are tremendously difficult as it is.

These past few months we’ve also seen and been through incredible destruction with what recent and current bushfires have been unleashing around our country and backyards…
Being a Dystonia Charity, we still wanted to extend a helping hand in this devastating time, we don’t know anyone that hasn’t been effected either indirectly or in the face of it battling on the front line, or losing homes, or worse.

We can gladly say, that all efforts and stressful late nights in trying to pull this event together in record short time, along with every extremely content guest out there on the day (and to those that couldn’t make it but still donated, thank you!), we’ve been able to raise up $8000!
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Enough for McKenzie and her mother Sheryl to see the last of funds needed to finally purchase the van + on road costs (though they still need to further wait another six months or more for NDIS to carry out the disability conversions - another reason why this had been an urgent matter for them).
We want to thank everybody involved that helped us get them over the line, it’s been great news and one less thing for them to worry about.

The other half of funds raised we were able to help out families between the MacLean and Nambucca Valley.
Families that have remained anonymous but have expressed deep thanks and gratitude in such a time. The particular families we’ve helped have suffered losses like many, but were also struggling to see support and a leg up in the aftermath. With this years event we’ve collectively been able to provide them with some much needed assistance.

Thank you from each of us here at this modest little team, The Dystonia Collective! We’re setting our eye’s on what we can achieve for 2020 event’s toward funding for Dystonia Research…

📸 PHOTO CREDIT: Adam Dederer Photography.
05.DEC.2019
It. is. ON!!!

​Tell ya friends!
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FULL ARTIST LINE UP BELOW...

If you can make it along this year, please get up and get along, it’s the community, you ~ you lovely fun lovin’ human, that makes this event what it is ~ because of you, this amazing event wouldn’t be the great day it is...

So, thank you.

And this year all for a mega cause..

We’ve not done too shabby at all with the brilliant artists that’ve so kindly and generously dedicated their time and skills to The Dystonic Blues this year..!

Check the Official Flyer below, but we have headliners making their way up from Sydney and Melbourne to support this event.

These particular artists haven’t played in concerts to crowds of less than something thousand to many thousands in most recent times.. meaning ~ this is a very special and rare opportunity to get along and see our artists in such an intimate setting ~ there are less than 200 tix available for this event... secure yourself a spot and grab yours today ⚡️

This years fundraiser event is also focused on a young 11 year old girl, McKenzie Tamala, she is one of the worst Dystonia cases in Australia. She suffers day and night due to the devastating impacts of Dystonia. We’re doing what we can to get her the help she desperately needs.
Which you can understand more of by watching a short video at this LINK.

On top of all this, these disastrous bushfires destroying our friends and families homes and beyond.. are needing support too.
This small grass roots charity The Dystonia Collective will be providing help, with your support, to share funds raised at this years event between McKenzie and those families worst effected from the fires.

A day not to be missed this year, for a very important and super meaningful cause, please do what you can to make it out here on Sunday the 22nd of December.

And let’s get up and have a good time while we do it :)

Purchase your ticket at PRE-SALE price, available right now by following this LINK !

Biggest of love..! See you out there xoxo
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26.NOV.2019
SAVE THE DATE!
It's official ~ The Dystonic Blues Fest is back for another year!
MORE DETAILS TO COME, ALONG WITH FULL ARTIST ANNOUNCEMENT LINE UP..
PRE-SALE TIX available right now via this LINK
Purchase today to secure your spot - this is an intimate gig with limited tickets.
​(kids & camping free)
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The Dystonic Blues Fest is an event that we’re aiming to run annually... and IT’S ON FOR 2019 ~ SAVE THE DATE (or change your plans;)

Things have been up in the air a little, with Jason only just getting back from Korea this year and then again recently landing back in Australia after making his way to Peru to help young McKenzie fundraise toward getting the desperate help she needs due to Dystonia.

There’s a lot to pull a mini music festival like this together, and times right now are busy, pressured, and worrying, with also what’s happening to our friends and families lives with recent and current wildfires.

Though it’s super short notice, and we’re pushing really hard to bring it all together for this years Dystonic Blues Fest, we’ve made the decision to do so ~ that it’s better to give it what we’ve got, and have it up and running as apposed to it lapsing this year.

No matter what, this year it will be a win for everyone getting along for it, as long as we have musicians, sunshine (or rain), good food, cold drinks, friends family mates and community, getting up for the cause and down for a big old boogie ~ that’s a win.

And the best part is, we have all of those things.

The people we’re aiming to help, really need our support.

So please get up for this cause and down for that boogie!

This years gig is a big deal..!
Jason’s back home in Australia finally, after almost an entire year of treatments in Korea, it’s a big that he’s seen the over 90% recovery that he has, that he’s in the stable condition that he is ~ that he’s at last able to get along to this event and be apart of it and enjoy it for the very first time.. this is the one.
It’s huge ~ according to western medicine he’s not supposed to be this way.

He’s not seen many friends since before he was diagnosed in early 2017. And not after Korea either.. it’s been so very long.. This is just one part of all of what this has been for him ~ but just the detached experience of going without human connection of friends for almost 3 years, has been, and still is, a degree of trauma for him emotionally and mentally.
It would be so nice to be able to come together for this event..
He’s home, and he’ll be there.

It’s an even bigger deal, absolutely, that the young girl, McKenzie Tamala, who has our charity of The Dystonia Collective fully focused on getting her the help she desperately needs.
Which you can understand more of by watching a short video by following this LINK.

Alongside our support for McKenzie, this small grass roots charity, The Dystonia Collective, will be extending our help, with your support, to share funds raised at this years event between McKenzie and those families worst effected from the fires.

There’s a lot of meaningful reason to make your way to The Dystonic Blues Fest this year...

If you can make it, please do.

It’s an intimate event with 200 tickets available right now ~ TIX are up for purchase, don’t miss this ~ secure yours today, get along for a good time and support this extremely worthy cause.

Thanks for your time in reading, and hope to see you out there :)

NB: we’re still in the process of securing acts, the ones on board so far are brilliant musicians, even have ourselves some up tempo didgeridoo acts, plus one of our headliners who’ll be traveling specially from Melbourne to make this event ~ all yet to be revealed along with full artist line up!

Watch this space;)
12.NOV.2019
NSW BUSH FIRES.
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Along with trying to help out McKenzie with the painful life of dystonia that she lives day after day, as a small grass roots charity that’s being built on friends, family, love, and community, The Dystonia Collective still wants to reach out and help families worst effected by the devastation and destruction that the recent wild fires along the coast of New South Wales have caused.
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We aren’t a big charity, but we would like to extend our hand and share the funds raised for what remains of 2019 between helping McKenzie and to bushfire effected families of this Valley we call home.

Our hearts go out to all of those that are effected by these wild fires.

If we can see community come together for our extra special annual event this coming Christmas period, December dates to be confirmed - for The Dystonic Blues Fest #3 2019 - where we’ll enjoy a day gathered together with friends, family, music, good food & cold beverages, and as much support as we can offer to those that need it most in this time.

Tickets available very soon..

Hope to see you there!
24.OCT.2019
MCKENZIE TAMALA.
We are now giving support to Sheryl & her daughter McKenzie Tamala.
McKenzie has a very devastating form of Dystonia ~ Generalized Dystonia ~ this is where the disorder effects her entire body.
Jason explains this, and their current predicament in the video below, please watch...
Please click this link to see Sheryl & McKenzies current situation and support options.
AUGUST.2019
JASON'S EFFORTS THROUGH PERU!
Jason has just completed his trek through Peru - totalling more than 270 kilometres over 16 days! 
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Click HERE to see the results of his fundraiser for McKenzie Tamala :)
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MAY.2019
JASON'S BACK!
Jason's just been through 11 months of TMJ Dystonia treatment in South Korea, and has finally returned home for the time being.
His Journey has been extensive and demanding, but he's seen a more than 90% recovery! An incredible achievement.
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He's not wasted any time and has set himself a giant challenge to trek as many kilometres, over 16 days, at high altitude through the Andes of Peru... To see support and funds raised for another Dystonia sufferer (Warrior), young McKenzie Tamala.
You can learn more about McKenzie by clicking this link.

You can also read more of Jason's Story and his efforts by clicking this link.
JUNE.2017
JASON'S PUBLIC OUTREACH...
Here, Jason shares this newly diagnosed disorder that came from out of nowhere, turning his life on it's head, and driving him to some very scary places.. 

He shares his story in an initial outreach to the public with this GoFundMe fundraiser/awareness campaign, you can see full story by clicking this link.

ALL DONATIONS TO TDC ARE TAX DEDUCTIBLE
​

​We have been endorsed by the Australian Taxation
Office as a Deductible Gift Recipient
from the 9 January 2018
​

​What does that mean??
That means now any donations you make including monthly donations you can claim on your tax return!
Donations through our Gofundme Page are not tax deductible. So best to donate directly through our site!
​So now you have even more reason to donate!
​

$20 Donation

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$50 Donation

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$100 Donation

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Past Events

22.DEC.2019
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This years third running fundraiser event is focused on 11 year old girl, McKenzie Tamala, one of the worst Dystonia cases in Australia. She suffers day and night due to the devastating impacts of Dystonia. We’re doing what we can to get her the help she desperately needs.
Which you can understand more of by watching a short video at this LINK.

On top of all this, these disastrous bushfires destroying our friends and families homes and beyond.. are needing support too.
This small grass roots charity The Dystonia Collective will be providing help, with your support, to share funds raised at this years event between McKenzie and those families worst effected from the fires.

A day not to be missed before the year is out, for a very important and super meaningful cause, please do what you can to make it out here on Sunday the 22nd of December:) 

FREE ENTRY for RFS and NSW FIRE & RESCUE - FREE CAMPING - KIDS FREE ENTRY (16 and under) - FREE COURTESY BUS

ALSO A GOOD IDEA to note, consider bringing yourself a chair or picnic rug if that suits you. We do have shade, a kitchen, food truck, bar, toilet facilities etc, though it's still a party in a paddock so not a bad idea to bring yourself some things to set in for the day and keep more comfortable:)

We are incredibly grateful for such amazing artists showing up for the day to donate their time for the cause! It's a huge part of what makes this event so beautiful!

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Some happy snaps:)
13.OCT.2018
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​The Dystonic Blues is The Dystonia Collectives second fundraising event. Yahoo! Our mission is to continue to help Jason Lynch who was diagnosed with an aggressive form of Dystonia in early 2017. Jason is currently receiving treatment in South Korea, though he has much more of a journey to go. Every month costing around $12,000. Dr Young Jun Lee is one of the only specialist in the world that offers a potential cure for this 'incurable' disease.
​
ALL profits from this event will go towards this much needed treatment. 

When: Saturday 13th October 2018
Where: Yarralen Retreat, 95 Mighells Road, Yarrahappinni, NSW 2441
Time: from 12:30pm 
Cost: $50 per adult - kids free





​We are so grateful for the filling artist for donating their time and love.

King Coyote
Rachel Rachel
Zechariah 
The Pelican Smugglers
Stef Edwards
Tori McLean
Damian Cooper


We will have activities for children, a preloved clothing stall, alcohol, food and a jumping castle and more!
Alcohol and food will be available so please bring cash as no ATM onsite.

Accommodation and Transport:
Camping is free at this event so bring your tent, swag or plan to sleep in your car.

Arrange for someone to pick you up or we will have a shuttle bus going to Stuarts Point, Scotts Head and Macksville.

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WE GOT RAINED OUT! BUT BIG LOVE FOR THE SUPPORTERS SHOWING UP IN THE MUD! WOO!
23.DEC.2017
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The Dystonic Blues is The Dystonia Collective first fundraising event. Our mission is to help Jason Lynch who was diagnosed with an aggressive form of Dystonia in early 2017. Jason has been accepted to attend a Dystonia Specialist treatment centre in South Korea which will cost upwards of $75,000. Dr Young Jun Lee is one of the only specialist in the world that offers a potential cure for this 'incurable' disease.
​
We are so grateful all artists are donating their time. We will also have a raffle, with donated goods on the day.

All profits from this event will go towards this much needed treatment.


When: Saturday 23rd December 2017
Where: Yarralen Retreat, 95 Mighells Road, Yarrahappinni, NSW 2441
Time : from 4pm
Cost: $50 per adult - kids free

Line up:

The Mason Rack Band
Salt and Pepper
Mental as anyFinn
Dylan Hammond
Jo Coby

Accommodation and Transport:
Camping is free at this event so bring you tent, swag or plan to sleep in your car.


Arrange for someone to pick you up or we will have a shuttle bus going to Stuarts Point, Scotts Head and Macksville.


Alcohol and food will be available so please bring cash as no ATM onsite.

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A few pics :)
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