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Dear Lymelighter,
 

 

Senate Inquiry Submissions Update

 
Remember in the last newsflash we said: "Now the hard-work really begins"?  We weren't kidding :-).  Luckily the saying 'many hands make light work' is true for this next task – all we need is your story!  

Deja Vue?  Yes, that's the exact same sentence from last newsflash :-).  We're 2 months into the Senate Inquiry on Lyme-like illness in Australia and there are 114 submissions counted to date (we are aware that there may be up to another 100 being processed).  We want to cross 1000 though!!!  

Can you help? Who do you know?  Family, friends, colleagues?  Who's witnessed your journey and believes we need urgent change in Australia?

Be a Submission Buddy - let us know if you're well enough to help someone else!

It’s important that everyone who has a Lyme-like illness, and their friends and family make a submission telling the Senate committee about their story. This is your opportunity to stand up and be counted. You don’t need to answer all the points in the Terms of Reference, you can simply tell your own story about how you became sick and how you’ve been treated. You can provide your opinion on any of the other points too. The committee are especially interested in hearing from people with a 'lived experience' of Lyme-like illness. We have over 1500 patients on our map survey, we'd like at least 2/3 of those stories submitted!

The committee accepts written submissions. If you are unable to make a written submission, the committee will accept an audio submission and will have your submission transcribed and published with your permission.

For simple, step-by-step guidance in making a submission, click here.  If anything is unclear or you have questions, please contact us.
 
Your stories are important and they will make a difference.  Please help us spread the word!




 

Senate Inquiry Submission Deadlines and Hearings


There has been some recent chatter in the online support groups and via emails to the LDAA about the deadline for submissions to the Senate Inquiry. We'd like to make the following clear about deadlines:
  • There is a suggested earlier deadline, as requested by Senator John Madigan, of the 31 January 2016. He asked us specifically, 'do you think you can get as many as you can in by January?'  He wants to demonstrate the breadth and depth of the impact of Lyme-like illness in Australia and hopefully prove to the Senate Committee the need for multiple hearings in different locations around Australia. The Senate Inquiry guarantees one hearing and we agree with Senator Madigan that this travesty requires more broad and intensive examination.
     
  • There is the final deadline, as set by the Senate Committee, of the 31 March 2016. This means you have until the 31 March 2016 to submit your story as anything past this deadline will not generally be accepted.
If you manage to make the suggested earlier deadline of 31 January 2016, or the final deadline of 31 March 2016 - fantastic - you've done yourself and the Lyme community proud!

We simply want the best for patients as this is our biggest opportunity yet to enact change. Both deadlines along with anything else you may need appear on our Senate Inquiry webpage and should you have any further concerns or questions then please contact us.
 

 

Politicians For Change

 
Senator John Madigan highlights the incredible actions of Australian Health Practitioner Regulation Agency (AHPRA) against Lyme treating doctors. Read his press release here.

Senator Dio Wang hosted a roundtable for Lyme-like illness in Perth, WA (image below).  Read his press release here.

 
Senator Dio Wang, his staff, Dr Peter Irwin and Lyme patients discuss the impact of Lyme-like illness in Australia and the upcoming Senate Inquiry. Thank you to our local LDAA representative for attending!
 



 

Petition Power, Go, Go, Go!

 
Our take action for Lyme-like illness petition is still growing.  It's obvious that Australians want action for Lyme patients - can you help it grow? 

Did you see Senator John Madigan's recent tweet?  Tweet or re-tweet him back or thank him for his support on Facebook!

Senator Madigan is watching the support grow for our petition.  Click here to copy the petition link to share with friends via email or Facebook...  your support is appreciated!
 

 

 

Lyme in the Media - Can we have your story?

 

Weekend Sunrise - Australia's Debilitating Tick Plague
 
"Australia is in the middle of a tick plague and thousands are suffering."  Senator John Madigan says "treatment of Lyme disease patients in Australia is absolutely atrocious".  Dr Richard Schloeffel indicates there's a lack of understanding in the medical community and highlights that there's thousands of Australians sick with Borreliosis and Lyme-like illnesses.   HUGE thank you to committed patients Lisa Gumieniuk and Peter Forbes – your brave contribution will make a difference.  Watch the segment here.
 
A Current Affair - Aussies Battling Lyme disease
 
Brilliant representation by Dr Richard Schloeffel and Senator Madigan – their incredible support is a 'game changer' for Lyme patients in Australia.  We know it was a significant effort for the Stevens family to share their 'life with Lyme', thank you so much!  Once again we thank LDAA volunteer and Lyme patient Lisa Gumieniuk, she's a 'force for change'. :-) Watch the segment here.
 
We Want Your Story - They Make a Difference
 
As you can see, sharing your story works.  With patient support, we want Lyme-like illness to be a 'dinner table conversation'.  

Can you help?  We've developed a 'ready to go' media release for you to customise with your personal story and share with your local media contacts.  Right click to download here.  For media assistance, contact us here.

 

 

Events Calendar

 
Beck's Battle Hits Toowoomba by Storm!

Beck Seekamp and her family are speaking out in the hope of raising awareness of Lyme disease.  See their story on Facebook here
 
If you'd like your event listed here in the Events, please complete an event registration form here.
 

 

 

Volunteer with us!

 
Join our wonderful volunteer team! LDAA works in a virtual online environment. You must have access to a computer, a stable internet connection, and have a passion to enact change in your community! LDAA's roles are expanding, often volunteers take on ad-hoc jobs, beyond their initial involvement. 

Our current volunteer positions are:
  1. Marketing/Fundraising | Need a passionate individual to help Lyme patients, bright/innovative ideas a bonus! Must be able to implement and manage fundraising projects as part of a team. Twitter expertise a bonus!
     
  2. IT Web Support | More details here.
     
  3. Events Coordinator | National coordinator of LDAA events, including supervising support groups, policies, maintaining and liaising with event holders, and team work with our fulfilment officer. 
Introduce yourself by sending us a message via our contact us form! We look forward to speaking with you!



 

From the Committee
 

Happy & Hopeful 2016 to you and yours!  We hope you had the best holiday season possible.  We're in the fight of our lives here in Australia, both in our hearts and our homes.  When we started our May Lyme Project for 2015, our HIGHEST goal was a Senate Inquiry.  With Senator Madigan and all of your help, we accomplished it! 

Now we need submissions to the Inquiry.  It doesn't have to be complex, simply authentic.  All the instructions are at the start of this newsflash.  Remember to let us know if you need help or would like to help and be someone's Submission Buddy!  

We have to pull together as a community on this one.  Will you join us?
 
Yours in Green, 

Sharon Whiteman | President

P.S. Remember to connect with us on Facebook & Twitter.  We appreciate your likes, comments, shares and re-tweets,  it's working!

  Join our volunteer
  team! 




 


 
Have an LDAA event, or want to include something in our next newsletter? Let us know about events here or other happenings here!

 
 
Copyright © 2016 Lyme Disease Association of Australia, All rights reserved.


Disclaimer:
The information in this email is not intended to be medical advice nor replace advice received from a Doctor or medical institution.


 
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