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Dear Lymelighter,
 


NRHA Conference

The National Rural Health Alliance (NRHA) conference was outstanding and so professionally organised.  It was a true 'alliance', a testament to the power of concerned Australians working together for the better good of all.  Our message was embraced and to be frank, there was incredulous disbelief that Australians could be so disregarded and 'Medically Abandoned'.  LDAA consultant, Jacqui van Teulingen's powerful presentation is now available to watch online. The full abstract will be available online within the next fortnight (look down the list for Sharon Whiteman as speaker).

We are continuing to connect with key health professionals we met at the conference and who will solidly represent our case.  Huge gratitude to the Country Women's Association of TAS and national Country Women's Association of Australia who continue to be strong supporters of our cause.  We encourage you to connect with the NRHA and CWA to offer your gratitude for their actions on all of our behalf.


The election is on!!  Here is your chance to SHARE your story & let your candidates, MPs or senators know that you have Lyme disease & that you VOTE!

It's easy to do & remember: They work for us!

The LDAA has developed a set of resources to help you open the door to a conversation with your local member.

It's Super Simple to participate:

Step 1. - Download the letter template, then customise to add your story (link is in the comments)

Step 2. - Google your local candidates, MPs, & senators & print & post or email your letter (link is in the comments)

Step 3. - Follow up & ask for their support, share your story & ask for a briefing (an LDAA representative can brief on your behalf)

Step 4. - Let us know who've you've connected with so we can follow up.

You can find out more here: 
https://www.lymedisease.org.au/raise-your-voice/

Questions

 
 


Silent Auction Prizes Wanted

We are excited to announce that in the coming months we are once again partnering with Nels Restaurant for a 2019 Lyme disease awareness and fundraising dinner.  Nelly is a staunch supporter and has witnessed the neglect and suffering of Lyme patients first hand through his close friend and fellow chef, Kirk.

Do you know anyone with a business or service that would offer a prize?
If the prize or service needs local access, then it would need to be Sydney-based.  Historically there have been vouchers, artwork, free dinners, memberships and more.  The deadline for contributions is May 30th.

Let us know if you can help!



Thank you to all the patients who have indicated they're happy to collaborate on a joint submission to the Medical Board of Australia's Public Consultation on clearer regulation of medical practitioners who provide complementary and unconventional medicine and emerging treatments.

This consultation threatens Australians' rights to natural medicine and other choices/freedoms in health care as well as directly discriminates against Lyme patients and their doctors.  It is very important that we submit and as the deadline has been extended to June 30th we will be in touch in May with further information.
 

Did you know that you can now raise funds for the LDAA directly through Facebook?

You can add fundraisers to posts or create one in lieu of birthday gifts......there are so many creative ways you can utilise Facebook fundraising.

All funds raised go to the nominated charity via their PayPal (giving) accounts 😍

We already have 2 amazing peeps who have set up LDAA fundraisers on their profiles & we would like to take this opportunity to thank them so very much 🙏🏻

It's SUPER easy, two ways to do it, 2-3 quick steps and you're on your way!
Watch Jen's quick video to learn how!

 


Some valuable blog posts this month

 
Remember to regularly check out our blog, there's a breadth of information and education for you. This month we've published:
 
When ALS is actually Lyme by Maree Kratzer

Many patients of tick-borne illness face an uphill battle for recognition in Australia. Not only do they navigate the physical, emotional, financial and social implications of chronic illness; they also battle a lack of scientific knowledge and medical support that denies them a healthy future.

Please join us in offering Rene's wife Karen Michaelis our continued sincere condolences on his death.  Rene wanted his death to mean something for other sick Australian Lyme patients, we'll continue to do our best on their behalf.
 
Rene pictured on 19th February 2019

 
 

Save your spoons by Melissa Aitken

 


We would  like to encourage you to become a member of the LDAA if you’re not already.

It's easy and free and you simply fill in this form.  Members are eligible to vote in the elections of LDAA Board Members.
 
The LDAA works tirelessly in the pursuit of seven key areas:
  • Advocates for individuals and families living with Australian Lyme and associated diseases with governments, doctors, and local communities;
  • Facilitates world’s best practice patient care and support;
  • Represents the perspective, lived experience and interests of the Australian Lyme patient community;
  • Acts as a conduit between international developments, research, treatments, and other Lyme communities;
  • Fundraises to facilitate improvements for people living with Australian Lyme and associated diseases by supporting the education of doctors and other health professionals;
  • Fundraises to support research and innovation in epidemiology, diagnosis, and treatment of Australian Lyme and associated diseases;
  • Educates the public and medical sector about the risks of Lyme disease and the need for early diagnosis and treatment (early detection makes this an easily treatable disease).
Your support is invaluable in assisting us to achieve real change for current and future Lyme patients.



Community News & Events

 

Chrysalis Support Group – NEW VENUE
Chrysalis meetings are held on every third Saturday of the month from 2-5pm at the
Cockburn Integrated Health meeting room 11, Wentworth Parade, Success, Western Australia (please NOTE change of venue). Contact Ailsa for more information  Facebook   Email

 
 

 

Volunteer with Us

 
Join our wonderful volunteer team! The LDAA works in a virtual environment and it's busier than ever!  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 contribute to ad-hoc projects beyond their initial involvement. 

Remember to reach out to your 'well' family and friends to invite them to support our cause!
 

Our vacant volunteer positions are:

  1. Fundraising Volunteer | This person will work with the Board in developing an annual fundraising calendar and giving programs. Experience with writing grant applications would be an asset.
  2. Media Volunteer | We need a passionate individual to work with communications and media engagement. This person would work directly with the Social Media Manager and CEO.
  3. IT Manager | WordPress maintenance with some database work (full position description available on request) - let us know if you're available!
  4. Writing Support | Love to write?  We are in need of support for blogs, grants and technical documents.  We work as a team and it's fun, inspiring and it feels so good to give back.
It's a positive team environment and we love collaborating to spearhead change for Australian Lyme patients. Introduce yourself by sending us a message via our contact us form!  We look forward to speaking with you!
 

From the Committee

 
The National Rural Health Alliance conference was a powerful personal experience for our consultant Jacqui and me.  Our challenges were openly received and while individuals expressed disbelief in the denial of medical care, you could have heard a pin drop in the room where we presented.  It's another step forward.   We are continuing to connect with key health professionals we met at the conference who will solidly represent our case.  Huge gratitude to the Country Women's Association of TAS and national Country Women's Association of Australia who continue to be strong supporters of our cause.

We'd like to thank the many patients and their families who have already reached out and asked us to brief their candidates, MPs and Senators.  We appreciate your actions and remember, historically, it's this joint effort that has led to the most effective engagement and subsequent action.  We're happy to assist.

The Department of Health have confirmed a independently facilitated summit to address Senate Recommendation 5:
The committee recommends that the Australian Government Department of Health facilitate, as a matter of urgency, a summit to develop a cooperative framework which can accommodate patient and medical needs with the objective of establishing a multidisciplinary approach to addressing tick-borne illness across all jurisdictions. 
(https://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-gov-response-lyme-final-report.htm)

We only have preliminary information at this point but we know that nominated representatives from patient groups and ACIIDS doctors are invited to the meeting on May 8th.  We will confirm further as promised information is forwarded but rest assured, we'll be representing the needs of sick Australians.

'It takes a village' :-)
Yours in Green, 

Sharon Whiteman | CEO (Interim)
Lyme Disease Association of Australia

Disclaimer: Any content within this newsletter is not intended to be a substitute for professional medical advice, diagnosis, or treatment, nor as an endorsement from the Lyme Disease Association of Australia (LDAA).

    
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