NEWSLETTER for December 2021

It’s my pleasure to be asked to help with the December issue of the LAM Australia newsletter. What better time to jump on board than Christmas! With Corinne and Louise’s guidance, in this month’s newsletter you’ll find mention of an article on Monoclonal Antibodies from Dr Jeff Lindenmayer, pictures of Corrine’s recent fundraising event, tips from The Lung Foundation Australia to manage your lung health this festive season and LAM Australia Christmas recipes.

If you have any ideas for articles or events that you’d like included in 2022 newsletters, feel free to drop us a line.

Take care and Merry Christmas!

Penny McKee, Port Macquarie NSW.

LAM Australia President’s Report:

Hello everyone,

I’d like to wish you all a very Merry Christmas and a happy New Year, I hope the holiday season brings you much happiness and joy – and Santa brings you lots of good things!

It’s been a busy time since my last update and we have some exciting news to share with you:

• We have signed a Memorandum of Understanding with the Lung Foundation of Australia who are working with us on the LAM Peer Connect program. The program can be accessed via our website LAM Peer Connect page  and the Lung Foundation website

The program will provide a one on one connection to others who are living with LAM that share a similar lived experience through peer to peer matching. If you are newly diagnosed or you or your loved ones would like more information or advice on how best to face the challenges of living with LAM then register your interest using the form on the website and a primary support contact will be assigned and will be in contact with you.

We thank the Lung Foundation and the wonderful team there, for their support and the work they are doing on behalf of our members, it is greatly appreciated.

• We continue to transition the admin functions to the new office bearers and I think we are almost there.
• We are forming a Social Committee and are looking for volunteers in each state to support us in putting together events and information sessions, please contact us if you are able to help out.
• Discussions are ongoing with the Lung Foundation Australian and The Thoracic Society of Australia and New Zealand who have agreed to Co-fund a 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 Lungitude Foundation is a charity that strives for excellence for lung transplant patients and their carers through research, advocacy, education and support. We are working with Lungitude to provide support for any of our members or their carers who may want information or support on lung transplants. See the article on Lungitude within the newsletter.
• LAM develops in about 40 percent of women who have a disease called tuberous sclerosis complex (TSC). LAM is a different condition to TSC however its association with TSC suggests that genetics may still play an important role. We are currently working with TSC Australia to form a stronger alliance to provide up to date information and support for our members to better understand the link with TSC and to explore better health outcomes.
• On Rare Diseases Day on February 28 2022 – please save the date, we are setting up a panel to do a webinar on living with LAM and we shall be in touch with more details shortly.
• We continue to arrange 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.
• We have setup a new Facebook page – Living with LAM Australia – please join the group.
• The website rebuild continues with a new theme and fresh new look, please let us know what you would like included on the site.

I thank the committee for their assistance and support in once again achieving so much in such a short amount of time.

I look forward to one day being able to meet our members face-to-face, but until then we shall continue to work towards providing improved health outcomes whilst keeping you supported and informed.

All the best,
Louise x

Contact: president@livingwithlam.org 

We are building a close alliance with the Lungitude Foundation to provide our members and their families with information and support pre or post lung transplant.

The Lungitude Foundation is a registered Australian charity focused on funding and facilitating world-class translational research, advocating for lung transplant excellence, building a strong community of support, and educating key audiences.

You are welcome to access resources on the Lungitude Foundation’s website –  including joining their Online Peer Support Network which is open to any LAM patients and primary caregivers who may be pre or post lung transplant.

You can also watch a replay of their recent Lungitude Annual Lung Transplant Research Presentation which showcased some of the world-class research being funded and undertaken by Australian researchers and specialists.

UPDATE on COVID-19 and LAM

Dr Jeffrey Lindenmayer, GP and Heather Telford, Past President of LAM Australia.

11th December 2021

It’s nearly 2 years since SARS-CoV-2 emerged from China and the COVID-19 pandemic began.
When you look back over newspaper articles from March 2020 you realise how much we’ve learnt about this virus – how you catch it, what symptoms come first and who’s at risk of being hospitalised.

We now know it’s mostly spread through aerosols that float in the air, that masks are more important than hand washing, and you’re contagious before you’re sick.

We’ve been surprised how quickly many types of vaccines have been developed, vaccines that are safe and effective and save lives.

We’ve seen disputes and social division about ivermectin and mask-wearing, and protests against lockdowns and mandatory vaccination, and we’ve learnt the virus can mutate and become more contagious but less susceptible to current vaccines.

Slowly, we’re realising COVID-19 will be around for a long time, and the Delta and Omicron strains will be superceded by new variants. Hopefully new variants will be less virulent.

Take-home Messages

• Vaccination is critical in protecting against severe COVID-19 and death. Talk to your doctor about having three shots as your Primary Course.
• Protection against COVID-19 fades significantly after completing the Primary Course. A Booster vaccination will restore immunity and can be given at 5 months, or sooner if your doctor advises. Regular Boosters may be needed in future.
• mRNA vaccines (Pfizer or Moderna) are recommended for 3rd shots and Boosters.
• Incompletely vaccinated people, including children, may be contagious without being sick. Women with LAM should continue to observe social distancing, minimise their time in crowded, poorly ventilated environments, and wear masks (ideally a N95) in public places.
• The Omicron variant appears to be more contagious and partly resistant to current vaccines due to changes in its spike protein. mRNA vaccines can be adapted quickly to cover new variants and we will probably see an Omicron-specific vaccine in the New Year.
• Monoclonal antibodies can effectively prevent deterioration in high-risk patients, such as women with LAM, but must be given early. Read more of Dr Lindenmayer’s report on Monoclonal antibodies on the news page on this site.
• Don’t drop your guard. Expect COVID-19 to remain in the community for a few more years.

Further Information: Your Festive Season Lung Health Guide

Christmas Recipes

Kate Wingrave: Sweet Potato Coconut Stew

Anna’s traditional festive Christmas Cake recipe

Corrine’s favourite gin cocktail recipes from Australia Ink Gin: Gin Cocktail Recipes

Penny: Christmas Crack 

Francis Eversham: Mince Pies

Louise: Pink and White Coconut Ice

Santa: 40 Christmas Cocktails

Bridge to Brisbane Fun Run Fundraiser

Corrine Lim – Vice-President, LAM Australia Research Alliance

After a postponement due to lockdown it was wonderful to gather team Walkie Talkie for LAM consisting of friends and hubby to participate in the special 25th anniversary Bridge to Brisbane fun run in November.

There was a change in the course which saw us start from Hamilton and finish at Brisbane Showgrounds. My highlight was going through the airport link tunnel to see and hear opera on the park performing with live singers and a band and walking with lovely river views.

We were pleased to raise around $1400 for LAM research and look forward to next year’s event.

If you would like to support us by donation, please visit our donation page.

Congratulations, Team Corrine! Nearly $1400 raised!

Tribute to Shelley

by Heather Telford
12th December 2021

On the first day of Spring we received the sad news that our treasured LAM sister Shelley Anderson had died from an aggressive brain tumour, surrounded by her family in South Yunderup, WA.

Shelley was our ray of sunshine, down to earth and always shining light into the lives of others, no matter how hard she was struggling.

Throughout our prolonged lockdowns in Melbourne in 2020 and 2021, she regularly posted photos of her beautiful frangipanis on our chat page. For many of us, this simple gesture brightened the darkest of days.

I still remember the first time Shelley called me many years ago, after her diagnosis. She was most concerned about how her illness would impact on her husband Steve, her soulmate, and her two young boys, Ky and Riley.

Additional tributes to Shelley …..