Advocacy: Spread The Word And Help Raise Awareness

For far too long, POTS has remained in the shadows, leaving individuals affected by this syndrome with insufficient access to proper diagnosis and care.

At the Australian POTS Foundation, we aim to lead coordinated advocacy efforts to ensure better recognition and increased access to government-funded care for all Australians living with this condition.

Stay tuned for updates on how you can join us in advocating
for POTS awareness and support across Australia. Together, we can make a difference.

Help Advocate for Better Care for Dysautonomia Patients

The Australian POTS Foundation is calling on supporters to contact their local Members of Parliament (MP) and request a pledge to improve access to diagnosis, treatment, and care for people with dysautonomia through the public health system. Carers and family members are also encouraged to join this important campaign.

How to Find Your Local MP:
You can find your electorate and MP by entering your postcode HERE.

Key Points to Include in Your Email:

  • Support the Pledge: Advocate for improved care for people with dysautonomia, especially POTS (Postural Orthostatic Tachycardia Syndrome), which predominantly affects young women.
  • Share Your Experience: Briefly explain how POTS has affected your ability to work, study, or socialise, and the barriers you’ve faced in accessing healthcare.
  • Highlight Unmet Needs: Emphasise the lack of TGA-approved medications, PBS funding for essential treatments, and equitable access to specialist care.
  • Request Action: Urge your MP to support systemic change, including public autonomic specialist services, subsidised medication, and ongoing therapy for those with POTS.

Template Email:

A sample letter is provided for you to copy and customise. Remember to include your full name and address to ensure your MP knows you are a constituent.

Your voice can make a difference! Together, we can work toward better recognition and care for the dysautonomia community in Australia.

Every time you send an email, if you have one of our email signatures in use, your recipients will learn something about POTS and your experience of living with POTS.

The text and images we supply here can be copied and pasted into your email signature settings in most email software or systems.

25% Of People

Text: 25% of people with POTS are so disabled by the condition they are unable to attend work or study. Find out more at potsfoundation.org.au

Australian POTS Foundation email signature | 25% Of People

Long Covid

Text: POTS is highly prevalent in people with Long Covid. Find out more at potsfoundation.org.au

Australian POTS Foundation email signature | Long Covid

Living With POTS

Text: I am living with POTS so pacing and balance are very important to me. Please be aware it may take me a few days to reply to you. Thank you

Australian POTS Foundation email signature | Living With POTS

Dysautonomia

Text: Did you know POTS is the most common form of Dysautonomia? Find out more at potsfoundation.org.au

Australian POTS Foundation email signature | Dysautonomia

Along with the Australian Dysautonomia and Arrhythimia Research Collaborative (Universtiy of Adelaide), we have made a submission to the Australian Parliamentary Inquiry into Long COVID and Repeated COVID Infections.

This submission outlines numerous recommendations including:

  • An urgent call for upskilling of allied health and medical practitioners in understanding of assessment and treatment of autonomic dysfunction
  • Reviews of MBS, PBS, NDIS and DSP guidelines to increase accessibility for patients with POTS/Long-COVID
  • Increased research funding, specifically to understand economic burden of disease

The full submission can be accessed via the below link, listed as item #167.

https://www.aph.gov.au/Parliamentary_Business/Committees/House/Health_Aged_Care_and_Sport/LongandrepeatedCOVID/Submissions

Organising a GoFundMe fundraiser for the Australian POTS Foundation is a meaningful way to support research, advocacy, and assistance for those affected by POTS. By rallying your community, you can raise awareness and contribute to vital initiatives that improve the lives of individuals living with POTS. Consider engaging in activities such as sponsored walks or runs, reading challenges, or personal challenges to inspire donations and participation.

Steps to Set Up Your Fundraiser:

  1. Create a GoFundMe Account: Visit GoFundMe and sign up.

  2. Start a New Fundraiser:

    • Click “Start a GoFundMe.”
    • Choose “Charity” as the fundraiser type.
    • Search for and select “Australian POTS Foundation” as the beneficiary.

  3. Set Fundraiser Details:

    • Goal Amount: Set a realistic fundraising target.
    • Story: Describe the purpose of the fundraiser and give your own story of your experience. Let your supporters know how funds will be used, and the impact on the POTS community.
  4. Share Your Fundraiser: Promote through social media, email, and community networks to reach a wider audience.

  5. Manage Donations: GoFundMe partners with PayPal Giving Fund to process donations, ensuring they are sent directly to the Australian POTS Foundation.

For a visual guide on setting up a GoFundMe fundraiser, you might find this video helpful:

 
Sources

For more information, including a ‘How to’ guide, please CLICK HERE.

To stay informed, connect with our community, and help raise awareness about POTS, follow the Australian POTS Foundation on social media. Engaging with us fosters support and understanding, empowering individuals affected by POTS. Together, we can amplify our message and drive positive change.

Connect with us:

Facebook X-twitter Instagram WordPress