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ausEE eNews - Issue 4 2023
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Dear Reader,
Welcome to this edition of our newsletter. We hope you find our newsletters informative and helpful and we invite you to share them with others interested in the work we are doing. ausEE’s mission is to improve the lives of those affected by eosinophilic diseases through providing support, evidence-based information, resources, advocacy and by campaigning to raise awareness and funds for further research in Australia.
Thank you for being a part of our community, you are the reason we do what we do! |
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Patient Charter - Plain Language Summary
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A Plain Language Summary of the ‘Improving Care in Eosinophil-Associated Diseases: A Charter’ has now been published in the Immunotherapy Journal. ausEE Inc. CEO and Founder, Sarah Gray, is a co-author of this global charter, which was published in 2022, and was pleased to collaborate again as a co-author on this new publication ’Plain Language Summary of principles for improving the care of people with eosinophil-associated diseases’.
The goal of this charter is to describe the key elements of good quality care, which all people with eosinophil-associated diseases (EADs) deserve, as well as to present an action plan to improve health and overall well-being for people with EADs. We urge healthcare professionals, hospitals, and policymakers around the world to adopt these principles.
Read the full Plain Language Summary by clicking on the PDF icon here. | |
Read the Plain Language Summary >> |
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Please take our research survey
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Do you or someone you care for currently drink an elemental formula (Neocate, EleCare, Essential Care Jr, Alfamino etc.,)? If yes, can you please take a moment to take this survey? This study is investigating health-related quality of life in people who use elemental formula and/or a feeding tube. Your time is greatly appreciated!
Take the survey here.
This research is being conducted by Dr Mercedez Hinchcliff, a researcher at the University of Wollongong and President of ausEE Inc. This study has been reviewed by the Human Research Ethics Committee (Social Science, Humanities and Behavioural Science) of the University of Wollongong. | |
Take the survey >> |
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Join us at the Free From + Allergy Show!
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We are excited to be a supporting partner of the Free From + Allergy Show coming to the International Convention Centre, Sydney on Saturday 21 and Sunday 22 October 2023.
Over 2 big days the Free From + Allergy Show is the ultimate destination for individuals and families with allergies, intolerances and specific food preferences.
If you know of an allergy friendly business that might be interested in exhibiting at this event, please ask them to contact us or Free From + Allergy for more information.
Visit the show website to find out more. | |
Free From + Allergy Show >> |
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We are pleased to share our 2022 Annual Report and invite you to take a look to learn more about who we are, what we do, our achievements, where your donation goes and our future goals.
We are passionate about our transparency and reporting to keep you informed. We value each and every one of our members and their contribution to our network and the generosity of our supporters who are helping us to achieve our mission.
Reader, with tax time fast approaching, if you are able to help us achieve more in our mission to improve lives affected by eosinophilic diseases, please make a tax-deductible donation to ausEE Inc. here.
ausEE Inc. is a charity that receives no government funding and we rely on our fundraising and the generosity of our supporters to keep us doing what we do. We acknowledge all donations $100 and over in our Annual Report, but please know that every gift, no matter the size, does make a difference! | |
Download the report >> |
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AGA EoE Patient Resource Center
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The American Gastroenterological Association (AGA) has developed an EoE Patient Resource Center with resources for parents and caregivers, young adults and adults. Check it out to learn more about eosinophilic esophagitis (EoE), including targeted videos to help explain EoE:
- What is EoE for children and their caregivers? video.
- What is EoE for teens and young adults? video.
- What is EoE for adult patients? video.
If these resources raise questions about your individual circumstances, please discuss with your doctor. | |
View the resources >> |
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Griffith University are examining the effect of a new treatment for eosinophilic oesophagitis. The trial is looking for adults across Australia. Participation will involve taking a supplement for 12 weeks and monitoring your symptoms. By taking part you will have the opportunity to be involved in the latest research for eosinophilic oesophagitis.
Please contact Rebecca at immunology-research@griffith.edu.au or 0422 381 424 for more information. | |
Visit the study Facebook page >> |
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Supporter Spotlight: Flynn Family
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Thank you to Scott and Evonne Flynn for their generous donation of $1,032! Scott and Evonne’s son Alex lives with eosinophilic oesophagitis (EoE) and we were delighted to hear this update that after 10 years he has been progressing wonderfully and is no longer reliant on any form of feeding tube. This is thanks to all of his doctors and dietitians supporting him on his EoE journey. Alex is now attending school more regularly than ever and also playing more sports!
This donation was made in support of Alex and will help fund more Australian research into eosinophilic gastrointestinal diseases (EGIDs) including EoE. Thank you, Flynn Family! | |
Support ausEE's Medical Research Fund >> |
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Research Spotlight: Join Us
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ausEE Inc. is a partner organisation of Join Us, a simple online register that connects you with researchers to help prevent, treat and find cures for health conditions.
Visit their Research Studies page for the full list of ethically approved studies that are currently seeking participants.
Sign up to be matched with research studies here. | |
Join Us >> |
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Play for Purpose - Draw closing soon!
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Don't forget to buy your ticket in the Play For Purpose raffle by 15 June for your chance to win the $250K first prize package including an incredible Volkswagen Crafter Kampervan valued at over $147K and over $102K in Gold!
Reader, to be in the draw, please buy your $10 ticket/s in support of ausEE. | |
Get your $10 ticket/s >> |
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Are you following Australian Allergy Friendly Finds?
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Australian Allergy Friendly Finds is our dedicated place on Instagram and Facebook to share all things allergy friendly! If you have discovered a great allergy friendly food, place, product or recipe that has helped you in living with an EGID and/or allergies and might in-turn help others, please share it with us!
We proudly don't accept or host any paid advertisements - we freely post to help others on their journey living with allergies and EGIDs, as we are living it too.
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Follow Australian Allergy Friendly Finds on Facebook >> |
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Pork Meatballs & Plum Sauce
500g pork mince
1 teaspoon crushed garlic
1/2 onion finely diced
1 teaspoon mixed dried herbs
1/4 cup quick cooking oats
Pinch salt/pepper
1 cup plum jam
Meatballs:
Combine all ingredients except plum jam in a large bowl and mix well.
With wet hands, roll mixture into small balls approximately 3cm and place on a greased oven tray.
Bake in a moderate oven for approximately 45 minutes or until cooked through.
While meatballs are cooking, prepare sauce.
Sauce:
Place jam and 1/2 cup water in saucepan and bring to boil, whisk until smooth. Simmer for 5 minutes, add meatballs and simmer for a few more minutes. Serve with jasmine rice.
Submitted By: Kathleen Hedger | |
More recipes >> |
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We are hosting a Support Group Dinner in Adelaide on Friday 23 June at 6.30pm. If you live in the Adelaide area and would like to join ausEE Founder, Sarah Gray and other people living with or caring for someone with an eosinophilic disease for a chat over dinner, please email Sarah for further details.
Our Virtual Support Group Chats are an opportunity to share and hear stories, ask questions and connect with others with lived experience. Please register your email here to receive the Zoom meeting invites.
ausEE's Online Support Groups take place in our private Facebook groups. We offer an online Facebook support group that you can join here. We have an additional Facebook group for Adults with an EGID/EoE that can be joined here. Joining our Facebook groups also gives you access to a list of allergy friendly businesses offering discounts to members.
We are creating new Facebook support groups for other eosinophil-associated diseases i.e. Hypereosinophilic Syndrome (HES), Eosinophilic Granulomatosis with Polyangiitis (EGPA). If you are living with an eosinophilic disease not currently covered by our existing EGID support groups, we'd love to hear from you so we can best support you. Please contact us via email to express your interest.
Livewire Australia can be joined by anyone aged between 12 to 20 living with a serious illness, chronic condition or disability (and their siblings). Join Livewire here and once approved join ausEE’s group called The Official ausEE Group. ausEE has a sign-up code and some introduction packs for new members so please email us to get yours!
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Join our online support groups >> |
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We welcome your questions and feedback, please contact us here.Best wishes,
Sarah and the ausEE Team
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Thank you to our Supporters:
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ausEE Inc. is a registered charity supporting people living with eosinophilic diseases.
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Donations over $2 are tax deductible.
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Disclaimer: This newsletter is published for information purposes only and should not be used in place of medical advice. The content of this newsletter has been prepared by ausEE Inc. The content is not influenced by our supporters and they have no input into the development of any of our resources.
If you are not already a member of ausEE and you would like to receive these newsletters you can subscribe here.
In the spirit of reconciliation, ausEE Inc. acknowledges the Traditional Custodians of country throughout Australia and their connections to land, sea and community. We pay our respect to their Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today.
ausEE Inc. is a charity that receives no government funding and relies on our fundraising and your generosity and support to achieve our mission. You have received this newsletter because you are a member on the ausEE website or Facebook groups, you have subscribed or provided your email address to us, or you are a supporter, friend or professional contact. You can unsubscribe at any time from the link below.
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