Copy
Prevention. Innovation. Recovery.
Donate »

Contact »
Follow on Twitter Follow Us On Twitter
Friend on Facebook Friend Us On Facebook
Forward to Friend Forward To A Friend
Dear Lymelighter,
 


LDAA submits Pre-Budget Submission

Each year the Treasurer calls for submissions from individuals, businesses and community groups seeking their views regarding priorities for the 2019-20 Budget; this is called the Pre-Budget Submission Process. The idea of a Pre-Budget Submission is to outline priorities and costings for funding consideration in the year's budget, in this case for the 2019-2020 budget which will commence on 1 July 2019.

Given the political pressures this year with an early budget scheduled for 2 April and a federal election to occur in May, it is important for us to continue to highlight the urgent need for funding. As such our Pre-Budget Submission sets out four critical areas requiring funding: research that focuses on precision medicine, practitioner education; patient support and assistance and prevention and awareness campaigns.

Pre-Budget Submissions are published on the Treasury website; including the LDAA submission.


In a follow up interview with Dr Jyotsna Shah, CEO and laboratory director at  IGeneX,  we were able to gain some valuable insights in their examination of one hundred blood samples from Australian patients suggesting that many have been exposed to Lyme disease, tick-borne relapsing fever, or both.

The results, which have not yet been published in a scientific journal, were described by,Dr Shah, in an interview with Marie Brown. It’s a must read blog for anyone who has had testing at IGeneX in the USA.



The Medical Board of Australia, the body responsible for registration, management and discipline of Australia’s 678,000 medical practitioners, has released a public consultation paper on “options to more clearly regulate medical practitioners who provide complementary and unconventional medicine and emerging treatments.”
 
According to the MBA’s consultation web page, they wish to “consult on options to best protect patients and minimise the risk of harm to them, without stifling innovation, making a judgement about specific clinical practices or limiting patients’ right to choose their healthcare.”.

Which is curious to us, given that the issues paper highlights Lyme disease and Lyme-like illness in the context of emerging treatment and specifically targets non-accredited laboratories and complementary medicine.

There are many serious issues that arise for Lyme patients in this paper's proposed options and in its discussion papers. As such, the LDAA has commenced working to submit a response.  Submissions are due by 12 April 2019.

Information about the draft guidelines and the consultation process is on the MBA’s  current consultations  page.


 


Although the consequences of Lyme disease infection in utero have not been definitively characterised, Borrelia has been found in the damaged bodies of fetuses and babies who could not have been bitten by a tick. And yet this important finding has not been fully investigated. Nevertheless, the absence of research and therefore, of evidence has seen  congenital Lyme dropped from the latest ICD.

Incredibly however, contracting a fatal illness from eating human brains IS included in the International Classification of Diseases, or ICD, published by the World Health Organization (WHO). Read more from Mary Beth Pfeiffer:
Scientific American: "When Lyme Disease Strikes an Unborn Child"
Mothers on a Mission to prove Lyme disease can be passed to unborn child


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 Pay Pal (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:

 

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


Sunshine Coast Event - Stories of Hope
Thursday, February 28, 2019 at 6:45 PM – 8:45 PM (apologies for late notice)

Kerrie Atherton, founder of Stories of HOPE Australia and EMPOWER Life Solutions has been working with individuals and families for many years now helping them through traumatic events in their lives and empowering them through counselling, therapy and community connection to find healing, purpose and HOPE. Lyme patient Trudi Bareham will be sharing her story.  More details. Buy tickets.

TICNA Call to Arms Meeting - Sunday March 17th, 2 to 4 pm, Frankston
A reminder of the “Call to Arms” meeting on
Sunday March 17th ---- 2 to 4 pm
Ebdale Community Hub and Learning Centre, 24 Ebdale St.  Frankston
Contact Chris Cole, cjacole7@gmail.com
Download full details

ROARR Community Event
30th March, 2019

The "Stand With Us" Campaign is a campaign for the recognition, adequate diagnostics, and treatment of Lyme Borreliosis and tick-borne diseases.  This is a global organisation and a campaign is currently being planned for 30th March, 2019 as a day to participate in ROARR.  Follow the link to find out more.

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. Writer | Love to write academic, technical and/or media copy?  We need you!  Ability to work within a team essential.
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

 
On the other side of the 'gigantic' disappointment in the priorities funded by the NHMRC, and in partnership with the patient community we have re-grouped and are moving forward.  Research outcomes five years down the track simply does not help the multitude of Australians who are sick now.  We must continue to act.

Having said that, we recognise that we have far too many suffering and medically fragile community members.  We are thinking of you, working on your behalf and, to the best of our ability, giving us all a voice.

The election period is a great time to engage with your Senators, MPs and candidates.  We will have template letters and fact sheets available next month for those who would like to link arms with us in reaching out, it really does make a difference.

We're just completing the first month back from our summer break – we'd like to confirm our 2018-19 Board.  Please join us in welcoming our newest member, Maree Kratzer who has volunteered with us since 2017.  Level-headed and wise, what a wealth of expertise and inspirational commitment she brings to our team.  The CEO position is currently open for merit-based applications which will open shortly.
'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).

    
Connect with us!


Like to make a difference?
Join Our Team!

 
Copyright © 2019 Lyme Disease Association of Australia, All rights reserved.
Email Marketing Powered by Mailchimp
unsubscribe from this list | update subscription preferences