ENDIA | Non-profit organisation

ENDIA

Phone: +61 8 8313 0847

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25.01.2022 ENDIA has new slinkies! A little thankyou from ENDIA for our participants. Big thanks to our slinky model, Poppy, from Adelaide.

25.01.2022 How time flies. Our adorable little ENDIA logo baby, Kalara, is turning 1! Happy 1st birthday, Kalara. Hope you had a cake smashingly good time! ENDIA nurse, Belinda, managed to visit them today to celebrate it in socially distanced COVID style.

25.01.2022 This is Eamon. He was the very first participant to be enrolled into the Regional Program. He has been in the Study since his mum’s third trimester of pregnancy and now he is 4.5 years old! We sure hope you find a good set of stairs for that slinky to wander down, Eamon. Enjoy!

23.01.2022 Belinda, Renee and Candice, ENDIA nurses from The Royal Melbourne Hospital are managing to keep ENDIA on track in Melbourne. "COVID19 has definitely changed the way we’re conducting ENDIA at the Royal Melbourne Hospital. With Stage 4 restrictions we’re now avoiding all physical contact with each other, but have adapted with regular virtual catch ups. We’re also unable to conduct visits with our participants in person, which is really tough. The highlight of our day is a high ...5 of our participants, through the window of their family homes, when we pick up their samples. The rest of the visit is conducted over the phone. We can’t wait for the day that we’re able to welcome our participants back into the hospital!" Thinking of everyone in Melbourne at this time. Our ENDIA families, nurses and scientists in and around Melbourne are all doing an amazing job.

22.01.2022 Elijah found the use of the VR goggles really helped distract him from his ENDIA blood test. We recommend them in children from the age of 3 years. If your child has not had the opportunity to use them, please ask your ENDIA coordinator for a turn! But they’re not for every child; some find them a little disorientating or just strange. ENDIA offers them as a suite of different techniques to make having a blood test the most positive experience it can be for our ENDIA childr...en. We notice you're holding the ENDIA kids booklet too, Elijah. Hope it was interesting (and a little bit funny).

22.01.2022 School holidays are here! What does your family have planned? These holidays might provide an opportunity to catch up on your ENDIA visit. We’d love to see you. Contact your local ENDIA coordinator or email us at [email protected] and someone will give you a call.

22.01.2022 Our little ENDIANs are at a slightly increased risk of developing type 1 diabetes because they have a first degree relative with type 1 diabetes. If any one of our participating ENDIA children develops autoantibodies, what does this mean and happens next? Islet autoantibodies are the earliest markers for the development of type 1 diabetes. These can only be detected in the blood. If a blood test is found to have these autoantibodies, we like to make sure that this is an accu...rate reading. We would ask to do more than one blood test to be able to confirm the positive finding. If more than one blood test returns a positive result, we like to keep a close eye on each little person. We have a network of specialist doctors, and the one closest to the family would offer a telephone or face to face consultation to discuss these findings further. Ongoing monitoring of antibody and blood sugar levels would be done at each ENDIA visit. ENDIA is also linked in with other research looking at monitoring, delaying and preventing type 1 diabetes from developing. One such study involves blood sugar monitoring using the latest CGM technology. Another includes the administration of a Hydroxychloroquine tablet through the international TrialNet research group which aims to prevent, or at least delay, the onset of type 1 diabetes. We hope our little ENDIANs do not develop autoantibodies or type 1 diabetes, but if they do, we will do our best to monitor them and offer every available option to the family. See more

22.01.2022 Our food diaries are relatively easy for the first six months of an ENDIAN’s life. Breastmilk and or formula are pretty much all that’s required. Come the time solid foods are introduced, the diary gets a little trickier. Measuring quantities and working out what your child actually ate can be challenging. We have some absolutely amazing families who complete the diary fully. Do you have any tips for families embarking on, or struggling with, the food diary for ENDIA? What tips and tricks worked for you and your little ENDIAN? Please share what worked (or didn’t work) in the comments below. Thank you!

22.01.2022 It’s back to school time! Are you ready? Some of our ENDIA children will be starting school for the very first time. Does anyone have any tips for first time parents? Comment below to share them here. If you have any first day at school photos you’d like to share with us, please PM or email to [email protected] and we’ll make a first day at school montage to share.

21.01.2022 Harry and his family participate in the ENDIA Study through the Regional Participation Program. We’re not sure if Harry’s more excited about the ENDIA balloon, his samples, or maybe it’s that enormous car on his lap?! Hard to say.

20.01.2022 At every ENDIA visit, we ask parents about illness, injuries and medications. This can be documented between visits in our child health log. We highly recommend writing these things down as and when they occur as it’s so easy to forget as time goes by. This information can also be documented in the Infant Feeding Diaries between the ages of 0-12 months. Why do we ask about illness and medications? Because ENDIA is interested in absolutely all environmental exposures or influences that a child experiences as they grow and develop. Is there a link between a particular virus or bacteria, or the experience of getting hurt or ill more generally that has an impact on the later development of type 1 diabetes?

20.01.2022 Chase from Queensland has been participating in ENDIA for over 3 years now. He is growing up so quickly and such a wonderful contributor to the Study. We’re very grateful to him and his mum for their time and efforts driving all the way to Brisbane for this visit. We really have some fantastic participants who give so much to help us find the causes of type 1 diabetes. Thank you!

19.01.2022 In this video, our friends Maeve and Steve explain another reason why ENDIA asks participants to have a blood test. The study not only checks for the early markers of type 1 diabetes, but also the early markers for coeliac disease. The two are autoimmune conditions which share some similar environmental and genetic factors.

18.01.2022 These three special people participate in the ENDIA Study from WA. Emily is participating in the study because her gorgeous big sister, Olivia has type 1 diabetes. The girls looked dressed for a party. But, no, they were dressed up for ENDIA! Thanks to Dad, Jack, for bringing the girls in to see us! We were very lucky indeed. Lovely to see you all.

18.01.2022 World Diabetes Day (14th November) shines a light on all the wonderful work that nurses do towards supporting, caring for and educating people about diabetes. We’d like to take this opportunity to acknowledge all the amazing work that our ENDIA Study research nurses and coordinators do to help collect precious samples and information in the quest to find the causes of type 1 diabetes. You all do a wonderful job.

18.01.2022 Here at the ENDIA Study, we completely understand that getting your child to have a blood test for research may not be your highest priority. However, should your child need to have a blood test for any other reason (e.g. illness, existing condition, hospital or GP visit etc.) please do let us know! ENDIA may be able to collect any remaining blood taken to use it for antibody testing. When we know the immune status of our ENDIA participants, all the other samples collected during the study make more sense in terms of the causes, or protective factors, of type 1 diabetes. If your child does have a blood test, please let your coordinator or any of our team know at [email protected] and we’ll do our best to contact the facility to follow up. Thank you so much for thinking of us!

16.01.2022 It's Coeliac Awareness Week from 13th-20th March. The aim of this campaign is to raise awareness about Australia's low coeliac disease diagnosis rate. An estimated 80% of people with coeliac disease don't know they have it, yet early diagnosis can reduce the risk of long term health complications. As well as islet autoantibodies to mark the earliest signs of type 1 diabetes, ENDIA also tests for coeliac antibodies. We have helped identify a number of children on the path to d...eveloping coeliac disease. Like type 1 diabetes, coeliac disease is also an immune disease. The bowel becomes damaged by gluten; a food protein from wheat, barley, and rye. This can lead to inflammation and poor absorption of the nutrients found in food. Coeliac disease is lifelong, but can be well controlled with dietary modifications. For more about coeliac disease, Coeliac Australia has some helpful evidence-based information at: https://www.coeliac.org.au/

16.01.2022 Enjoy this Easter long weekend!

14.01.2022 The countdown is on to Christmas; can you believe it? And we must get prepared to send out our ENDIA Christmas cards! But can you help us? We need a new colourful and fun Christmas picture drawn by an ENDIA child or sibling to use for our cards this year. The winning picture will receive a Lenny the Lion soft toy, and have their picture on our Christmas cards with their name acknowledged as the artist. Send your child’s entries to [email protected] or PM them to us via ...Messenger. Entries close Sunday 11th October. Get out those colouring pencils! Can’t wait to see your drawings, kids!

14.01.2022 To all our school-aged participants who have received an ENDIA Junior Researcher Booklet, we’d love to know what you think. Is it easy to read? Is it funny? Is it too silly? Please let us know. If you have any more questions or have other ideas for our ENDIA kids, we’d love to hear from you! Either comment below or send us an email to [email protected]. Thanks for being awesome!

14.01.2022 Are you like Nicole and little Ash collecting samples at home for ENDIA? We can’t thank you enough for helping to keep the Study going through this pandemic. We’d love to see your sampling techniques! Send us your self-sample pictures to [email protected]. THANK YOU!

13.01.2022 24 hour dietary recalls What is involved and why are they an important part of The ENDIA Study? Our dedicated ENDIA Dietitians (Rachel and Stephanie) contact families as close as possible to the fourth visit after birth (V4) when the child is 12 months old, V6 (18 months old) and V8 (24 months of age); so between 1-2 years of age. These phone calls are conducted over the phone and provide detailed information on the nutritional intake and dietary patterns of participating ...children. This data informs other areas of the Study like the microbiome. Along with the other dietary surveys we ask families to complete, our diet recall information provides the most comprehensive Australian data on what children eat and drink. This information hasn’t been collected before in this age group of children so it is very exciting and unique information to have! So when our Dietitians call, we do hope you don’t mind chatting to them about what your child is eating and drinking. No judgments and no advice. Just important data collection taking place providing more pieces to the puzzle as to what causes type 1 diabetes.

12.01.2022 Winters get pretty chilly in the ACT. Little ENDIAN, Hannah, has quite the collection of warm woolly hats to keep her nice and cozy. Here she’s modeling just a couple from her collection. Looks like you’re also keeping happy, little Hannah. What a winning smile.

12.01.2022 Unfortunately, the COVID-19 pandemic continues to cause us all bother. But not to be disheartened, our amazing families - especially in Victoria - soldier on collecting the samples they can for ENDIA and answering our questionnaires. Here is ENDIA mum, Nicole, and bubs Ash collecting skin swabs. Beautifully done and much appreciated! Are you like Nicole and little Ash collecting samples at home for ENDIA? We can’t thank you enough for helping to keep the Study going through this pandemic. We’d love to see your sampling techniques! Post your photos online using the hashtag #letsendiacovid or PM them to us and we'll share them on our socials.

10.01.2022 This little fairy participates in the ENDIA Study from Sydney. We wish we could wave our magic wand and make type 1 diabetes disappear too, Liz! Thanks for helping us find the causes of type 1 diabetes so we can try to prevent it in the future! You are magic.

09.01.2022 Evelyn’s mummy is a midwife from Bathurst. We’re very lucky to have her collecting samples from Evelyn for us through the Regional Program. And already Evelyn is learning the trade by expertly helping mummy collect her throat swab. The throat swab gives us important information about viruses that may be living in our bodies. Do these have some influence over the development of type 1 diabetes? Well done and thank you for providing this valuable information, Evelyn and Evelyn's mummy!

08.01.2022 Bonjour from France! Here is our international ENDIAN, Isabella. Although she was born in Australia, she currently lives with her family in France at the moment. In fact her little brother, Isaac, was born there. It does make sample collection a little tricky at this time, but mum, Bethany continues to complete all our questionnaires until they return to Australia. Here, Isabella is modelling her tres chic tutu out and about The Palace of Versailles. Ooh la la, Isabella!

08.01.2022 It’s World Gratitude Day today. What are you grateful for?

06.01.2022 ENDIA is back at the Royal Melbourne Hospital conducting study visits. If you haven’t been in to the Royal Melbourne Hospital for a visit in a while, we’d love to see you there! Thanks to the Thandi family who recently came in to help us put the pieces together to solve the puzzle of type 1 diabetes (and this underwater jigsaw scene).

05.01.2022 Congratulations to Alexis, aged 5, from Victoria on her winning drawing which will be this year’s ENDIA Christmas card design. A big thank you to all the children who sent in their Christmas drawings. They cheered us up no end! Ho ho ho. We’ll be showcasing all the drawings sent in to us on our Facebook page in the lead up to Christmas.

05.01.2022 10th September is RU OK Day. This year we feel it’s more important than ever to reach out to our ENDIA friends, families and staff to check in to see if you are OK! We want to let you know that we’re here and we’re thinking of you during this most unsettling of years. Try to make time for yourself to do something that’s enjoyable or relaxing. Don’t be afraid to reach out to someone for a chat or to ask for help.

05.01.2022 The focus of the ENDIA Study is to find what causes the trigger to develop type 1 diabetes. This is fairly well understood by our participating families. However, we also test for a number of other things when we take a blood sample. The blood sample provides information about the early signs (antibodies) of coeliac disease. Coeliac disease is also an immune disease. The bowel becomes damaged by gluten; a food protein from wheat, barley, rye and oats. This can lead to inflammation and poor absorption of the nutrients found in food. More than one in 70 Australians have coeliac disease, but it is often undiagnosed. Coeliac disease is lifelong, but can be well controlled with dietary modifications.

04.01.2022 The ENDIA Study not only tests for islet autoantibodies (the early markers of type 1 diabetes) but analysis of the blood sample can also detect for coeliac antibodies. Like type 1 diabetes, coeliac disease is an autoimmune condition and not uncommon for people with a family history of type 1 diabetes or other autoimmune issues. People who live with coeliac disease have a negative reaction to any foods that contain gluten. For people with coeliac, gluten can damage the lining... of the small bowel and prevent absorption of the food and drink they consume. This is Aubree. Aubree is an ENDIAN. Here she is about to have a procedure called a gastroscopy. This came about because her ENDIA bloods were repeatedly positive for coeliac antibodies. A gastroscopy involves a biopsy sample of the bowel. This is done under anaesthetic and will be able to confirm whether Aubree has coeliac disease or not. If she does, her doctor will recommend that Aubree starts a gluten free diet to prevent her getting sick. Amazing Aubree was all smiles before and after the procedure! If you have any queries about ENDIA’s test for coeliac, comment below or email us at [email protected].

02.01.2022 ENDIA test for antibodies which indicate the early markers of type 1 diabetes as well as coeliac disease. We can also detect Vitamin D levels. Vitamin D helps the body absorb calcium and phosphate from food; important for our bone health. Very few foods naturally contain vitamin D. Most vitamin D is made in the skin when it is exposed to the sun.... Low vitamin D has been linked to health problems including: bowel cancer, cardiac disease, rickets, problems fighting infections, and autoimmune diseases (including diabetes). Many people do not have symptoms when they have low vitamin D levels, but some children experience bone or muscle pain. Treatment includes supplements and time outside. It’s important to consult a health professional as too much vitamin D can also cause problems.

02.01.2022 We hope this doesn’t bug you out, but our bodies play host to an extremely large family of bacteria. These trillion-plus bacteria provide our bodies with vitamins, help us digest food, protect us from nasty pathogens, and only rarely turn nasty on us. But did you know that wherever there are bacteria, there’s fungus as well? Known as the mycobiome, fungus can be found on our skin, in our mouths, our gut and even in our lungs! So ENDIA seeks to find out if the mycobiome has any influence on type 1 diabetes in children. Stay tuned and watch this space!

02.01.2022 This dynamic duo, Ruby and Eliza, are twins participating in the ENDIA Study from Victoria. These two delightful gals have been in ENDIA since birth and certainly kept their mum and dad busy ever since! These proud smiles displaying their blood samples make us smile. Thank you, girls (and special thanks to mum and dad!)

02.01.2022 Pearl is one groovy girl. She participates in ENDIA through the Regional Program. We appreciate everything she and her family sends to us in their biobottle every 6 months! Including these gorgeous photos of this gorgeous gal. We thought the beachy scene especially appropriate for Australia Day.

02.01.2022 Siblings from WA are the first to start in our new study. We will use continuous glucose monitoring (CGM) to measure the blood glucose levels (BGLs) of children at high risk of developing type 1 diabetes (T1D), but who do not yet have clinical signs of T1D. Each receives a little belt bag to carry their monitor and teeny tiny CGM and transmitter for their special doll or soft toy to try CGM too! Our team are excited to offer this to many ENDIA children who are positive for islet autoantibodies to help find further clues as to the potential progression of clinical T1D.

02.01.2022 Now we certainly don’t expect many children to respond to a blood test this way, but little Fletcher from NSW managed to sleep through this one. That’s one relaxed and precious little soul.

01.01.2022 This tooth fairy is so very obliging to help ENDIA with its type 1 diabetes research. Aren’t these letter exchanges marvelous!? Thanks to Lexi for her generous tooth donation for type 1 diabetes research and to the tooth fairy for letting us have this one from their collection. The rest are indeed yours to do your fairy magic!

01.01.2022 To all the fathers and father figures, have a wonderful day with your special people.