NEWSLETTER for October 2021

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Introducing our new President – Louise Lloyd

Louise is living with LAM and has been for many years. Following a pleurodesis in 2004 Louise was misdiagnosed, however following a decline of lung function went through a series of additional tests and has now been correctly diagnosed with LAM.

A senior leader with over 20 years’ experience, Louise currently works with the University of Technology Sydney in the International Division. She has worked in senior roles within global corporations such as Toyota, Intercontinental hotels and Allianz and has a passion for transforming teams into centres of excellence through introducing development opportunities and coaching in management and leadership skills.

She holds an MBA (Executive) from the Australian Graduate School of Management UNSW, is a Graduate of the Australian Institute of Company Directors and holds a number of board roles including not-for-profit support foundations.

On becoming President of LAM Australia, Louise said she would focus on supporting women living with LAM and those that love them….and will encourage and support research projects that improve the health prospects of women living with LAM.

President’s Update

Hello everyone,

Since taking over the role of President in July this year, it has been very busy. Firstly, I would like to thank the outgoing president Michael Neustein for his contribution to the association during his term and the outgoing committee members for their work as well. The committee members are all volunteers and do spend a lot of their spare time working for us. Let me introduce you to our new Committee:-

Louise Lloyd – President
Corrine Lim – Vice President
Prof. Brian Oliver – Treasurer
Michael Neustein – Secretary
Lauren Sharpe
Penny McKee
Kate Wingrave
Dr Sukhwinder Sohal

In the last couple of months, we have:

  • Transitioned most of the admin functions to the new office bearers
  • We have joined Rare Voices Australia as a partner
  • We are forming a Social Committee and have an approved Terms of Reference for the member
    of the committee
  • We have updated the Association’s Constitution to the recommended latest version which we
    will present at the next AGM for members approval
  • Discussions are underway with the Lung Foundation Australian and The Thoracic Society of
    Australia and New Zealand to form a Co-funded research project. We are currently working on the research priorities for the application. If you would like to put forward your ideas of research that will be of most value to our members, please contact me.
  • The Lung Foundation are also providing support to help us set up a Peer Connect Support Program to provide our members with one-to-one support. We have a contact for NSW, VIC and QLD. If you would like to become a support contact for other States please let me know.
  • Arranging a calendar of events over the next 12 months, please let us know if there is anything you would like us to include for you.
  • Setting up a new Facebook page – Living with LAM Australia – The Facebook link will be added to this website when finalised.
  • Rebuilding this website with a new theme and fresh new look, it is still being worked on so please let us know what you would like included on the site.

So it has been a busy time and I thank the committee for their assistance and support in achieving so much in such a short amount of time.

I look forward to working to support you – our members, and providing you with the information, support and research outcomes that will improve our health prospects…….

All the best,
Louise x

June was designated Worldwide LAM Awareness Month (WWLAM) by the Worldwide LAM Patient Coalition, aimed to unite the global community in a collaborative effort to educate the world about the signs and symptoms of LAM, raise funds to support women living with LAM, and share our achievements to inspire researchers and clinicians to optimise therapies and find a cure for LAM. In Brisbane the LAM friends celebrated WWLAM on 19th June 2021, grateful for the chance to catch up after many months due to lockdowns with many stories to share.

 

Frequently Asked Questions about COVID19 and LAM

Dr Jeffrey Lindenmayer, GP, Melbourne & Heather Telford, Past President, LAM Australia, have released an informative up-to-date article about COVID19, Vaccines how it relates to those living with LAM.

Please read the full article on this site >

What is SARS-CoV-2 virus and how is it related to COVID-19?
SARS-CoV-2 is a virus. The name is short for ‘Severe Acute Respiratory Syndrome Coronavirus 2’.
COVID19 is the illness caused by the virus. It is short for ‘Coronavirus Disease of 2019’.
But ‘COVID19’ is easier to say, so most people use ‘COVID19’ to mean both the virus and the illness.

Why is COVID19 vaccination so important if I have LAM?
COVID19 targets many organs including the lungs, heart and brain.
In the lungs, infection causes swelling of the airways and increased mucus production.
This reduces oxygen and CO2 exchange and causes breathlessness and exhaustion, hence the name ‘Severe Acute Respiratory Syndrome’, or SARS.
The most critical patients need to be placed on a ventilator in ICU to help them breathe.
If you have a chronic respiratory condition like emphysema, bronchiectasis or LAM your lung capacity is reduced, so further inflammation will increase your risk of pneumonia, hospitalisation, ventilation, and death.
Pregnant women, diabetics, elderly people and those with impaired immunity are also vulnerable.
Your family and friends should be vaccinated to reduce your risk of being infected.

What’s the difference between vaccines?
Three vaccines are currently available in Australia and are known by their manufacturers’ names, AstraZeneca, Pfizer, and Moderna. Novavax will release their vaccine in late 2021.

The AstraZeneca vaccine is made in Melbourne under the brand name ‘Vaxzevria’.
It uses an unrelated virus (a deactivated ‘adenovirus’) to introduce the viral spike proteins (not the whole SARS-Cov-2 virus) to your immune system to stimulate anti-spike antibody production.

Pfizer vaccines are imported under the brand name ‘Comirnaty’, and the Moderna vaccines under the name ‘Spikevax’. These vaccines contain small strands of mRNA which induces your cells to manufacture the spike proteins, stimulating an immune response.

The Novavax vaccine, known as ‘Spikevax’, works by directly injecting nanoparticles of spike protein

I’m taking rapamycin to treat my LAM. Will I get more side-effects when I have the vaccine?
No. Rapamycin does not increase your risk of side-effects from Covid19 vaccination and should not be stopped before you get the jabs.
The vaccine cannot cause COVID19 infection since it delivers just small fragments of the virus, and these are neutralised and degraded by the antibodies which your immune system creates.
‘Rapamune’ is an immunosuppressant so if you become particularly unwell after the vaccination, or at any other time, please see your GP.

Could Rapamune make the Covid19 vaccine less effective?
Yes, the vaccine may be less effective because rapamycin can reduce your immune system’s response to the spike protein, so the level of your antibodies may be lower.
In USA, people taking rapamycin or similar drugs such as everolimus are advised to have a third dose of the vaccine to boost their antibody level.

Entertainment Books 2021-2022

Kate Wingrave has organised fundraising through selling Entertainment Books which are a great way for people to explore new places around Australia and New Zealand via exclusive membership discounts. 

Order Books Here >

20% of your membership goes directly to: LAM Australia research Alliance

TSC Alliance are holding a virtual international TSC and LAM Conference which you may wish to attend:

The 2021 Virtual International TSC & LAM Conference: Driving Discoveries Beyond Boundaries presented by Greenwich Biosciences and the Rothberg Institute of Childhood Diseases and co-hosted by the TSC Alliance and The LAM Foundation, scheduled for October 28-30, 2021.

For more details >

We have been following LAM websites Overseas. Some interesting articles

Active Mother of Three Advances LAM Research

LAMPOSIUM From Your Living Room

Life Arc Case Study on LAM via LAM Action UK

Dr Sukhwinder Sohal, Rommy, from  UTAS has provided some websites with good information on LAM:

Conditions and Treatments 

Respiratory Translational Research Group – RTRG. RTRG focuses on discovering and identifying novel mechanisms that may act as exciting new therapeutic targets for treating chronic lung diseases.

https://www.facebook.com/RTRGUTAS 

Corrine Lim – Vice-President, LAM Australia Research Alliance

Hello everyone,

I am very excited to start up a new Social Committee with the aim to reach out to the LAM community, foster support and ongoing connections nationally and within each State / Territory. This purpose of this Committee is to organise and facilitate social and fundraising events for women living with LAM,
their carers, partners, families and friends.

The importance of wellbeing, finding ways to stay connected while being physically apart from others throughout the pandemic lifestyle since 2020 has been challenging for some. We have had to change our ways and mindset to live in a more digitally connected world. I would like to organise more virtual events where you can participate from the comfort and safety of your home and enjoy activities while meeting others in our community.

I would LOVE to hear from you if you would like to be involved or find out more about the Social Committee. E: corrinet@hotmail.com

All the best,
Corrine x

Fundraising Event – November 2021

To kick off events, I have formed Team Walkie Talkie for LAM in the upcoming Bridge to Brisbane event on 7th November 2021, walking / jogging 4.5kms with best friends and family, to raise funds for LAM Australia Research Alliance. If you would like to join my team virtually please refer to: https://bridgetobrisbane.com.au/virtual-event/

If you would like to support us by donation via Paypal or Scan QR Code:

Donate with Paypal

 

 

 

 

 

 

 

“You only have the day in front of you. Take 5 deep breaths throughout the day. Surround yourself with positive supportive people.”


How to Remain Calm… >