On Wednesday last week (8th May) we attended a Think Tank in Sydney. It was run by Allen & Clarke, a public policy consulting firm who have been contracted by the Australian Government Department of Health to develop an evidenced-based clinical pathway and multidisciplinary care model for patients suffering from Debilitating Symptom Complexes Attributed to Ticks (DSCATT); we call it Australian Lyme disease.
The purpose of the Think Tank was to bring together all those people with an interest in the topic including patients, medical and allied health professionals, representatives of medical colleges and public health officials. There were around 30 attendees with an additional 14 or so joining online.
While we expect to see a formal report of the day, we thought it was appropriate to update the community on the things we learnt and were able to contribute to on behalf of patients.
Continue to full blogpost.
The greatest excitement to date is the Labor election promise to fund the pan-disease, personalised medicines model research lead by LDAA SAC Chair, Prof Gilles Guilleman. This research project in collaboration with doctors in Australia including Dr Richard Schloeffel OAM, Dr Bernie Hudson, Royal North Shore Hospital Infectious Disease Specialist and esteemed scientist Prof Edward Holmes of Sydney University along with other eminent international collaborators in USA, France and Germany will include any patient with neuro-inflammatory disease.
An exciting and innovative aspect is the biobank which will build a foundation to inform future research, treatments and drive innovation in the health management of Australian Lyme patients.
The conversations have been important and all engagement is worthwhile. EVERY Australian deserves to know the hidden danger of Australian Lyme disease. No matter the successful party of this 2019 Australian election, the Labor commitment building on Minister Hunt's action to date indicates support from which we can build on going forward.
The LDAA is proud to have developed consistent, quality relationships with multiple parties. We have parties working in partnership with us to develop Australian Lyme policies and our intent is to eradicate the challenge of our politicians feeling being the 'lone voices' in parliament on this issue.
Australian Lyme disease is a truly multi-partisan issue, NO Australian is free from danger and the combined action by Lyme community groups over the years has seen these conversations move to the family dining table. Rarely do we encounter someone completely unaware of this risk.
We'd like to take this opportunity to wish everyone who has stood up for a parliamentary position good luck in the election. We are looking forward to continuing our important work with you no matter what the outcomes are. Everyone knows someone with a tick-borne disease and we are all aligned in finding solutions to the access to health injustices seen across this great country.
Imani Benfell is a 12-year old author & publisher who has committed to donating a dollar from each book sale to a different charity each month. We are honoured that she has nominated LDAA for the Lyme awareness month of May!
“Mysteries of Maybelle” is Imani’s first book, written with passion, & with the support of a team of illustrators & mentors.
Diagnosed with Ehlers Danlos Syndrome (EDS) 3 years ago, Imani well understands chronic illness. Like Lyme disease, EDS is poorly understood: Symptoms come & go with varying intensity, sometimes confining her to a wheelchair, & always making it difficult to plan ahead for social activities.
Thank you Imani! We wish you all the best for your writing career. We also think you will be an exceptionally empathic cardiologist!
You can read more about this inspiring young author & Mystery of Maybelle here
ONLY $2 TO HELP THE LDAA!!
An amazing chance to WIN 100's of GREAT PRIZES
The People’s Choice Community lottery is back!
Last year, thanks to the AMAZING support of the Lyme community we raised over $10,000 towards our fight for Lyme patients. This year we are hoping 🙏🏻 to do the same.
Among the 100’s of prizes are 2 cars, a diamond ring & a $20,000 Harvey Norman house package and more!
What are you waiting for..........just $2 for your chance to win 😀
Buy your tickets here, it's easy! 💚 Spread the word!
Lyme-ED is 50% for May Lyme Awareness Month
In celebration of May Lyme Awareness month Dr Nicola has announced a special sale for her signature course, Lyme-Ed: The Complete Guide to Adopting an Integrative Approach to Chronic Lyme Disease.
In honour of Lyme Awareness month, Lyme-Ed is 50% OFF THIS MONTH ONLY, which is a serious deal for how much you are getting inside the well-guarded knowledge!!
Here’s a quick recap of what’s waiting for you inside the Lyme-Ed:
- LIFETIME ACCESS to 10 masterful lessons & files that will teach you everything from diagnosing Lyme to integrative approaches to tips for living with Lyme long-term
- BONUS MODULE #1: Using Essential Oils to Strengthen Your Body's Defenses Against Chronic Infections
- BONUS MODULE #2: The Benefits of CBD in Lyme Disease
- Get all your burning questions answered by me inside my private Facebook community group, The Naturopathic Mama Community.
This is an AMAZING DEAL … You’re getting over 20 hours of Dr Nicola's teaching and a ton of Lyme insight all for only $98.50 (for patients) or $198.50 (for practitioners) when you invest during Lyme awareness month. That’s less than the cost of a 15 minute consult with most Lyme-literate docs.
Learn more and order!
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?
Thank you so very much to those of you who've already contributed!!
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 June 15th.
Let us know if you can help!
Remember to regularly check out our blog, there's a breadth of information and education for you. This month we've published:
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!
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.
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
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:
- 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.
- 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.
- IT Manager | WordPress maintenance with some database work (full position description available on request) - let us know if you're available!
- 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!
We thank the Department of Health team and Minister Hunt for ensuring the Think Tank was progressed. The calibre of patient representative input into the workshopping questions was outstanding, you can rest assured that Australia's Lyme patient community were well represented. While at first glance, there are important issues missing from this Clinical Pathways process and significant hurdles to overcome, there are many, many informed individuals collaborating to 'get this right'. They're listening and together we can make progress.
The election 'month' has seen a swirl of activity at the LDAA and in the patient community. Huge thank you to all of you who used this as an opportunity to educate and offer a 'call to action' to our candidates, MPs and Senators. We appreciate you and we've backed you up where indicated or requested. The next most powerful touch point time would be to reach out to your newly elected representative. As always, we'll have your back, let us know if we can help.
'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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