Type 1 TRAVEL SPECIAL

Issue 83/ July – October 2019

Doing it yourself How safe is DIY technology?

Protection Pregnancy packet priorities Advances in Project seeks to wrapping beta cells improve healthcare to keep them safe

Treatments beyond insulin New investment boosts prospects

Ready for take-off WORLD Campaign success for type 1 air travellers AT HER FEET One woman’s global ambition

Join us in finding the cure for type 1 diabetes Learning that diabetes A word from Karen management can be about The CONTOUR®DIABETES app just choices, not just constraints. got even smarter. With brand new Everything is possible That’s illuminating. features, you can explore your diabetes like never before and keep motivated Type 1 diabetes should never be a to stay on track with treatment plans. barrier to accomplishing anything. Managing the condition does mean, though, that some things need extra planning, like travelling. In this issue, we explore the best way to get the most out of travel when you live with the condition. We talk to people with type 1 who love to travel whether it be in the UK or far flung destinations. 6 running also needs careful preparation and this year 27 runners with type 1 took part in the Marathon in JDRF colours Marathon contributing fully to what was a fantastic overall effort success by the team. Runners raise I’d like to extend a huge congratulations and thank funds for type 1 you to all 143 of you who ran for us. So far more than £390,000 has been raised for type 1 research. I am immensely grateful for all the support that you 5 10 give JDRF. Everything you do brings the cure closer.

Karen Addington Encapsulation 12 Chief Executive The research area bringing us closer to a cure Join us on Editor: Jonathan Henderson, Managing Editor: Orna Joseph Production Editor: Deepti Bahal social media Contributors: Cazzy Magennis, Jamie Lowe Read this onlineResponding to Cazzy Magennis as featured on pages 6/7 Cover picture: jdrfuk Get the latest edition of Type 1 Discovery JDRF does not endorse any of the products or services at jdrf.org.uk/discovery glucoseto find out how monitors advertised in Type 1 Discovery. Articles in Type 1 Discovery written by freelance contributors do not necessarily represent 12:23 jdrfuk My Readings the views of JDRF. WED THU FRI made easier

Today, Friday, Oct 21

mmol 5.2 L 12:23 These foundations and trusts are supporting the following research projects:

My Week (Past 7 days) The Steve Morgan Foundation Masonic Charitable Foundation The Charles Wolfson Charitable Trust Using chemically modified insulin in a new Mike Green Foundation. Pancreatic enteroviral persistence - Harnessing vascular stem cells to model and treat 1 10 7 test for type 1 diabetes a molecular trigger for islet autoimmunity and type 1 diabetes diabetic retinopathy My Averages Neuroimaging Hypoglycaemia Awareness in humans Dr Reinhold Medina – Queen’s University Belfast Dr Nissim – Queen Mary University of London Dr Sarah Richardson – University of Exeter Sugar Free Can high-intensity exercise combat A generous legacy from the estate of James Elson The Bernard Sunley Charitable Foundation hypo-unawareness? Overnight closed loop control in suboptimally controlled Glucose Responsive Insulin Therapy (GRIT) Professor Rory McCrimmon – University of Dundee type 1 diabetes under free living conditions Dr John Fossey – University of Birmingham TrialNet Professor Roman Hovorka – University of Cambridge ® Professor Polly Bingley – University of Bristol Wellcome Trust and Sugar Free Apply for a FREE* CONTOUR NEXT ONE meter by The Alan and Babette Sainsbury Charitable Fund JDRF/ Wellcome Trust Diabetes and Inflammation The Mason Le Page Charitable Trust Beta cell turnover in patients with long-standing Laboratory Glucose Responsive Insulin Therapy (GRIT) type 1 diabetes Professor John Todd – University of Oxford visiting www.contournextone.co.uk/JDRF0518 Dr John Fossey – University of Birmingham Dr Richard Oram – University of Exeter and Professor Yuval Dor – Hebrew University, Jerusalem

* Eligibility criteria apply. Only one meter from the CONTOUR® range per person every twelve months. Ascensia, the Ascensia Diabetes Care logo and CONTOUR are trademarks and/or registered trademarks of Ascensia Diabetes Care Holdings AG Apple and the Apple logo are trademarks of Apple Inc., registered in the U.S. and other countries. App Store is a service mark of Apple Inc. The Bluetooth word mark and logos are registered trademarks To find out about all the research projects we fund, visit jdrf.org.uk/research owned by Bluetooth SIG, Inc., and any use of such marks herein is under licence. Google Play and the Google Play logo are trademarks of Google Inc. © Copyright 2018 Ascensia Diabetes Care Holdings AG. All rights reserved. TRAVEL SPECIAL 3 JDRF0518 NEWS & VIEWS NEWS & VIEWS

Find out more Trial finds New Chairman is You can keep up with our latest news at New investment long-time supporter jdrf.org.uk/news artificial or follow us David McTurk has been boosts pancreas safe appointed UK Chair of the JDRF Board of and effective Directors. search for David’s daughter, We asked you... Sarah, was diagnosed Have you ever had any in toddlers with type 1 22 years ago treatment at the age of 11 and the problems travelling with The artificial pancreas is a safe and family became heavily type 1?’ beyond effective treatment for very young involved with the charity children, according to the results of soon afterwards. We always have trouble with David has supported Professor the latest trial. orange juice – we are never insulin and championed allowed to take it through and Colin Dayan many JDRF fundraising have to throw what we have away initiatives including cycle then buy some in the airport. The next generation of immunotherapy research for rides and organising the Newbury David McTurk, JDRF Walk to Cure Diabetes. Sarah Board of Directors type 1 diabetes has been given a £490,000 funding has taken part in skydives and I've never had problems. Every boost by JDRF and Diabetes UK supported JDRF with donations in country I’ve been to is relaxed and lieu of gifts from her wedding. seems to fully understand. A network of British scientists, A number of immunotherapies backed by the two charities and have shown promise but multiple I’ve been travelling the world called the Type 1 Diabetes UK trials are needed before a drug can with type 1 for 41 years and Immunotherapy Consortium (T1D UK), be licensed. The consortium will never had any problems. I’ve was set up in 2015. Its aim was to work to fast-track this process and Confronting myths and had a pump since 1999 and a make the first immunotherapy drug get immunotherapy drugs to market CGM for 7 years. available to people with type 1. sooner. misconceptions This major new funding, announced Scientists believe these treatments in May, will allow the scientists three could pave the way towards a cure for Twenty-four children from ages one to Diabetes Week, an annual more years to continue their research type 1. seven trialled the technology day and night UK-wide awareness week into finding treatments that will stop, Rachel Connor, UK Director of for six weeks at home. that takes place in June, Our survey says or prevent, type 1. Research Partnerships for JDRF, said: They spent on average 70 per cent of the encouraged the public to Advances in immunotherapy ‘Our funding will empower more time within the target glucose range of #SeeDiabetesDifferently by What part of the world have you found to be the most research have the potential to move scientists to coordinate and integrate 3.9-10 mmol/L, and experienced no severe examining the myths and type 1 friendly when travelling? treatment for the condition beyond data from a greater number of hypos or ketoacidosis. misconceptions that face insulin, which has been the only studies. This will accelerate research The trial was carried out by Cambridge- people living with type 1. Topics option since it was discovered nearly progress and bring swifter change for based Professor Roman Hovorka and included the causes of type 1, 55% 100 years ago. people living with the condition.’ living with the condition and his team who have been developing an Europe artificial pancreas since 2006. how to respond to people who are unfamiliar with it. 30% America or Canada STARS TURN OUT FOR PRO-CELEBRITY MARATHON TEAM RAISE FUNDS FOR RESEARCH GOLF CHALLENGE Our 2019 10% team included some well- Asia A JDRF Pro-Celebrity Team Challenge known faces. These included Golf Day took place in May, raising Dan Hawkins, guitarist of the nearly £20,000. The event, at Woking band The Darkness, whose 5% Golf Club, was attended by the actor daughter has type 1, and Jonny Labey, the former England the comedian Ed Gamble, footballer Sir Trevor Brooking and the who himself has type 1. So far magician Jamie Raven. the impressive team has raised For more information about the latest more than £390,000. news go to jdrf.org.uk/news

4 TRAVEL SPECIAL TRAVEL SPECIAL 5 REAL LIFE REAL LIFE

Change your lock screen on your phone to a message explaining you have type 1 diabetes in the language of the country ‘My aim you are travelling

is to travel adjust my insulin to suit the new time 7. Trying new foods: Carb counting zone. When I am on an aeroplane, I new foods presents a challenge, set my insulin pump to the destination but there are ways to overcome this. time. After a few days I will start to Download apps such as MyFitnessPal to every notice patterns and can adjust my as they give you a generic carb count insulin as necessary. of any new food. You can use this as a guide. Or, if you’re travelling to a 4. Dealing with airport security: destination such as Asia, where you country in People with type 1 can find airport know the meals are heavily rice and security daunting because they noodle based, you can experiment are unsure of what to do with their with your portion sizes of noodles and equipment and how much insulin rice at home before you go. Of course the world’ they can carry. I find it’s best to get a it won’t be exact, but it’s a good place doctor’s letter explaining that because to start. I have type 1 I am carrying supplies to treat my condition. I also translate that 8. Carrying supplies: Whether you’re letter to the language of the country I on a two-week holiday or a month- am visiting. At land border crossings long backpacking trip, type 1 can be people don’t tend to speak English. annoying because you’ve got to carry I’m Cazzy Magennis, and I am a full-time all your supplies. Well I have some 5. Carry lots of hypo treatments: good news: many airlines allow you to world traveller who has type 1 diabetes. I When sightseeing in a new country, bring on an extra bag to hold all your am on a three-month trip around Central it’s important to be ready for hypos. supplies so you don’t have to sacrifice It’s normal to experience them clothes, make-up or presents. It’s America and am in Guatemala as I write while you are adjusting to your new also a good idea to split your supplies surroundings, so be patient with between you and whoever you are this. It’s a country that presents some yourself. But carry lots of sweet things travelling with (or two different bags if with you, especially if you are visiting you’re travelling solo) just in case one challenges to travelling with type 1 remote areas. I take dextrose tablets goes missing. 2. Managing the heat and diabetes: with me because they are small and I The heat brings down my blood can keep them in my pocket. Travelling with diabetes is possible o far in Guatemala I have I encounter the heat or try new foods glucose levels. It tends to do this for anyone. It takes a little patience, climbed volcanoes, swum in again I have a better chance at My type 1 has for a lot of people. Sometimes I can 6. Wear medical ID: Whether you’re research and preparation. Sthe most beautiful waterfalls, success. had some ups and make a 50 per cent reduction in my travelling with family, friends or going I absolutely love travelling the world. visited ancient Mayan ruins, tried lots So, based on what I’ve experienced insulin, especially if I am walking up solo, you should always wear medical It’s all I’ve ever wanted to do, and I am of delicious local food, partied in the here in Guatemala, I wanted to pass downs and, as with volcanoes or kayaking down rivers. ID. You could be separated from your lucky enough to do it as my job. I hope city of Antigua and kayaked at Lake on some tips on how to travel with I wear a flash glucose monitor when travelling partners at any stage, so to be the first person with type 1 to Atitlán. type 1. every country I visit, travelling to help catch trends more be prepared. It’s also a good idea travel to every country in the world and My type 1 has had some ups and quickly, which allows me to adjust my to change your lock screen on your you can follow my journey on my blog downs and, as with every country I 1. Keeping my insulin cold: Central there is a period basal rates and fast-acting insulin. phone to a message explaining you Dream Big, Travel Far. visit, there is a period of adjustment. America is a warm place and my have type 1 diabetes in the language I hope that on the way I can inspire It typically takes me four to five days insulin and body aren’t exactly used of adjustment. It 3. Managing time zones: Going from of the country you are travelling. as many people as possible to realise to fully adjust myself and my diabetes to the heat (being from Ireland)! This London to Central America meant You can make these yourself on your that diabetes won’t stop them from regime to a new country, climate, means I need to keep my insulin cold typically takes me I went back in time and needed to computer and send it to your phone. achieving any of their dreams. foods and much more. while travelling. I use Frio bags to do four to five days to I’ve had hypos in the heat and this when I’m not storing it in a fridge. misjudged carbs, but that’s all part of I’ve been using Frio bags for five years fully adjust myself the journey and learning experience. now and I can safely say I’ve never Get support on living with type 1 at jdrf.org.uk/living I note everything down so that when had bad insulin while travelling.

6 TRAVEL SPECIAL TRAVEL SPECIAL 7 CAMPAIGN LIFESTYLE Landmark Product watch breakthrough for Accessories that make travel with type 1 easier type 1 air travellers

Rachel Humphrey went into action after her family was held in an airport police room over her son’s insulin pump. The campaign she organised went global and has resulted in the Frio cool packs Myabetic travel cases Diabetic Supply daily kit bags launch in the UK of a Medical Device These handy packs are great for Myabetic has a wide range of carry Access a variety of different kit Awareness Card. This is her story keeping insulin cool on the go. cases that cater for different types of bags to take daily type 1 supplies They come in different sizes to fit type 1 supplies and treatments. out and about. your needs. friouk.com myabetic.com diabeticsupply.co.uk ue to potential damage, documentation for presentation at the • ‘They should follow rules because I insulin pump and continuous search area. went through a scanner and my pump Dglucose monitoring system The campaign for alternative security went wrong and instead of giving me (CGM) manufacturers advise that screening – for example, via a wand three units it gave me 30 which made the medical devices should not be inspection to test for traces of explosives me fit and go unconscious.’ exposed to x-ray screening and full- – is critical as failure to do so could N Daly, My type 1 shopping list body airport scanners. Regulations swiftly cause medical consequences, as allow passengers with these medical these two examples show: Another result of the campaign was devices to ask for an alternative that the Head of Security at ACI World security screening process. • ‘I was forced to pass my pump successfully presented the issue to the ‘I love the taste, smell and caffeine However, despite the protocols in through the scanner at an airport. International Civil Aviation Organization kick of coffee – but generally limit place, there have been many negative Five days later my pump developed (ICAO), which advises on global experiences at airport security for an intermittent fault and gave no standards and recommended practices. insulin pump and CGMs users. warnings. I was unaware it had stopped Updated guidance material was then myself to one, and never after midday included in the 10th edition of ICAO’s These included my own family’s delivering insulin for up to four hours , 39, from London was diagnosed with type 1 at the age Security Manual (Doc 8973). Airports Melissa Blaik morning person, I do look forward to it! distressing experience when we were at a time. I became ketoacidotic and of 14. She now works as a nutritional therapist with a special interest Council International (ACI) published But, I generally limit myself to one, and held in an airport police room for over was rushed into hospital two years ago in type 1 a full-page article called ‘Best practice never after midday because I’m sensitive two hours and denied access to an yesterday. I was told I was two hours to the stuff! I try to have it at least an aircraft due to my son’s insulin pump. away from death.’ L Kirton, France for screening of insulin pumps’ in their ‘Eating the right foods helps me to manage my type 1. Blood glucose World Report, which was sent to their hour after breakfast as it depletes the As a result I organised a campaign levels can affect how you feel every minute of every day. Exercise absorption of nutrients. In fact I find it can that went global and has attracted 590+ members operating 1,850+ airports and keeping active – especially to offset the days I sit in front of the in 170+ countries. really push my blood sugars up if I have it more than 12,700 supporters. computer for hours – is also important to regulate blood glucose too early before I’ve had breakfast. As a direct result of the campaign, levels and maintain insulin sensitivity.’ a new Medical Device Awareness Dextrose Printed version of card – Smoothies • I take these everywhere but don’t use Card sponsored by the Civil Aviation get one free! Authority (CAA) and Airport Operators • They make a great breakfast. I use fruit such as blueberries or them very often. They are really effective Association (AOA) was launched in The card acts as a Rachel Humphrey has had 8.5cm raspberries (high in antioxidants), 200ml of almond, coconut or oat for treating a hypo and raising blood sugar the UK in February this year. x 12.5cm double-sided versions of milk (unsweetened), half an avocado (slows down the absorption fast. Because I don’t love them, I tend not The card acts as a reminder to reminder to Security the Medical Device Awareness card of the sugar), tsp cinnamon (great flavour), handful of almonds to overshoot. They are purely functional! printed (the perfect size to tuck (skin on for extra fibre), tbsp flaxseed (high fibre), handful of Security Officers that alternative Officers of alternative Explore Cuisine Edamame & Mung Bean in your passport!) and is happy to spinach (good source of folate and iron, plus the Vit C in the fruit processes to screening by security Fettuccine processes to screening provide them free of charge upon boosts the absorption of iron). It’s a brilliant way to start the day. scanner and spare devices by x-ray • I don’t eat wheat as it doesn’t agree with receipt of a stamped addressed are available. It is also a reminder by security scanner Coffee me. It tends to spike my sugars in a way envelope (UK only). For details for passengers to prepare for their • I love coffee: the taste, the smell, the caffeine kick. Not being a that is hard to control – I go high and please email: [email protected] journey including taking the correct then crash down – but I do miss it. Then I discovered this alternative. It’s high JDRF’s Community Engagement team is If you want to share your shopping list, protein/fibre and tastes great with the working with airport consultative committees email us at [email protected] usual pasta sauces. I love it and often Go to jdrf.org.uk/campaign to find out more to improve airport experiences for people take a box away with me. with type 1.

8 TRAVEL SPECIAL TRAVEL SPECIAL 9 LIFESTYLE Q&A Thoughts of a type 1… Type in 10 Sophie Dean is 25 and works as a junior doctor in London. She Traveller recently spent her elective period as a student working in Zambia. She has had type 1 since she was 15. She uses a pump and flash Jamie Lowe was diagnosed with type 1 in glucose monitor 2015 after graduating from university. He now works as a TV presenter for Bristol Live, How did you find out you had limited access to healthcare for What do you see as the most type 1? diagnosis and treatment. I did see important area of research with which means travel is a big part of his life. a lot more type 2 than I thought I regards to improving the lives of On a month-long shoot in Norway, which Jamie Lowe A I had the classic symptoms so was would. Wealthier people in Zambia, people with type 1? taken to the GP and ended up in especially in the cities, have an included an encounter with wolves, Jamie hospital for a week. It’s a fairly seismic increasingly ‘westernised’ lifestyle, so A I think the artificial pancreas is still learnt an important life lesson change in the way you live your life, but there is a surprising amount of type 2 important, especially as people are it gets easier as time goes on. as well as high blood pressure. starting to make DIY systems themselves at home. This involves linking the pump Did your type 1 influence your ‘Extreme temperature changes will My heart hits the floor. Have I really dropping the temperature to close Does doing type 1-related and CGM so they ‘talk’ to each other, decision to become a doctor? kill off your insulin’ – the words of my just killed off a whole pump cart? to -15 degrees. This swiftly killed off research interest you or do your and is what some research groups have ambitions lie elsewhere? been working on for years. Also very Diabetes Specialist Nurse suddenly Do I have enough left to last three the insulin – and it took me only the A No – I had wanted to become a come to mind. Of course, that’s more weeks? After a quick search in following 48 hours to realise. important is continued research into doctor since I was very small. It has At the moment I am interested in what’s happened! After two days my suitcase I realise I packed double The lesson here is I’m human, I’m A treating complications. possibly influenced my interest in the endocrinology, including diabetes, spent agonising about what caused what I’d need to cover the trip. Drama going to make silly mistakes. But endocrinology and diabetes speciality . renal medicine (kidneys) and general Does it frustrate you that there my blood sugar to reach heights I over, I insert a new pump cart and knowing that silly mistakes are likely acute medicine. I would definitely is still a great deal of ignorance haven’t seen since diagnosis, I finally we’re good to go. means that past-me can prepare for You chose to work in Zambia be open to doing research in the among the general public about have an answer. ‘I’ll make sure But how did we get here? Well that future-me and we can both get along during your elective period as a future, whether that be in diabetes or the difference between type 1 that doesn’t happen again,’ I say to involves a pack of wolves. As part just fine. student. Did working there affect something else. and type 2? myself. of my bucket list I went to a zoo to the way you managed your type 1? This life lesson comes, as they have a face-to-face meeting with the You’ve written for Type 1 A It is frustrating but I also think it See more from Jamie: A It didn’t change the way I managed it, often do, when you least expect or planet’s most ferocious canine. They Discovery in the past about is slowly changing. At least I hope @jamieLoweTV but it did bring home how fortunate we appreciate them. I’m in Norway in are a pack of wolves that have had blood glucose monitoring. it is! I think media outlets have a youtube.com/JamieLoweTV are in the UK to have access to insulin the northern city of Alta preparing human contact since birth so they Should flash and continuous responsibility to always state which type jamielowe.co/blog and blood glucose meters, etcetera to spend a cold night hunting are less likely to kill visitors – but monitoring be regarded as they are referring to, which they don’t – let alone the new technology that is the northern lights. I’m here on a nothing is guaranteed. rival systems? always do. month-long shoot filming a travel To meet the wolves a set of rules coming onto the market. At the hospital documentary where I complete a must be followed. This includes: NO I was at they did have insulin and some A They should be seen as What’s your quick-fix of choice list of things to do before you die SCENTED ANYTHING. And anyone medications for type 2 but I didn’t see complementary rather than rival. when your blood sugar goes low? (the irony of dangerously high blood who uses insulin will know how many meters. It is important people understand the differences between flash A My usual go-to is apple juice if I’m at glucose on this trip is not lost on me). scented it is. Based on your experience what Preparing to live monitoring, which involves scanning home, dextrose tablets if I’m out and Preparing to live out of a suitcase So I weigh up the options: I run advice would you give someone a sensor to get an instant reading, about, and jelly babies if I’m running. for a whole month must be difficult high for a few hours or make myself a with type 1 who’s planning to out of a suitcase and continuous monitoring devices for people without type 1 but packing tasty snack for the wolves. There’s no work abroad in an environment (CGMs), which send readings a pancreas along with enough contest. for a whole month very different from the UK’s? underwear makes the task even more The wolf encounter goes amazingly. continuously to a device – and that difficult. I’m terrified initially but they end must be difficult A Come prepared with plenty of spares – people who would benefit from I’ve recently started using a pump up being just big puppies and I am and be prepared to let things slide a bit! these latter devices are still able and I’m close to cracking it but I’m licked to death by a pack of animals for people without to access them. Flash monitoring very much still reliant on my stockpile that could easily tear me limb from type 1 but packing a How did the incidence of type 1 in has definitely opened up a world of of supplies to cover for the failed limb should they wish. Zambia compare with the UK? glucose sensing, trends and graphs, cannula insertion attempts. With My heavily scented insulin, pancreas along with rather than just finger pricks, to one single 20kg suitcase though, the however, is locked in the van in the A It is probably lower – but in addition many people. stockpile couldn’t come with me. car park and a snowstorm sets in enough underwear to this many people there have very makes the task even more difficult You can read more stories about people living with type 1 diabetes on our blog. If you’ve got a story to tell, email us at [email protected] Go to jdrf.org.uk/blog to find out more

10 TRAVEL SPECIAL TRAVEL SPECIAL 11 RESEARCH FOCUS RESEARCH FOCUS

Research that’s giving Your support has helped us to make protectionism a good name this research possible. To fund more research like this, visit jdrf.org.uk/fundresearch JDRF reviews the progress of encapsulation techniques whose aim is to perfect a ‘functional’ cure for type 1 by shielding transplanted insulin-producing cells from are supporting. This involves a successful encapsulation of live cells head, using the protein to repel the immune attack device that can be implanted into the in patients with advanced pancreatic immune cells from the beta cells they abdomen. Developed by US company cancer using its Cell-in-a-Box mistakenly tried to attack in type 1 ViaCyte, it holds the cells inside a capsules. diabetes. The field of regenerative medicine is seeing many protective bubble to keep them safe This live-cell encapsulation When they encased beta cells in promising developments using encapsulation – a from immune attack. technology is made from cellulose a gel coating that contained the technique that keeps cells contained and protected once Called the Encaptra system, it has – a naturally occurring plant source protein, and implanted them into transplanted into the body. similarities with how a tea bag works. that is free from impurities and has mice with type 1, the researchers As part of its cure research, JDRF is working with It has holes that are small enough to been shown to last two years in found the mice produced their own partners to develop this technology so that one day allow nutrients through to enable the the body without breaking down or insulin for at least 300 days, which people with type 1 diabetes will regain insulin-producing cells to live and work, but won’t let causing damage to tissue nearby. was over six times longer than in the beta cells – something known as a functional cure, as this immune cells in. PharmaCyte is working on mice with cells that did not contain will replicate how a healthy pancreas works. Following the clinical trial at the encapsulating a human cell line any of this protein. In type 1 diabetes, the beta cells are killed off by the University of California, researchers that has been designed to function All of these techniques being immune system, so encapsulation techniques are being found that implanted cells survived as a ‘bio-artificial’ pancreas when developed are bringing us closer to designed not only to allow the transplantation of new and matured into cells capable implanted in a patient with type 1 safely replacing the lost beta cells beta cells, but, more crucially, to protect them from of producing hormones including diabetes. for people living with type 1, allowing another immune attack. insulin and glucagon, but the And a team at Massachusetts for the detection of changes in blood JDRF has been helping to fund a number of different process of putting it inside the body General Hospital has been studying glucose levels and the production of encapsulation projects. One technique involves (engraftment) needs to be refined the protein CXCL12 that has a insulin on demand. protecting the transplanted beta cells with an alginate and improved upon. repellent effect and drives immune As Karen Addington, CEO of JDRF in Last August, coating, which the immune system doesn’t respond to. There is a newer encapsulation cells away from the area where they the UK, explains: ‘Islet encapsulation This is called micro-encapsulation. product that is showing promising are produced, so that they can fight has huge potential to transform the researchers in the US, Last August, researchers in the US, partly funded by results in this area. Early this year, infection in the rest of the body. lives of people with type 1 diabetes partly funded by JDRF, JDRF, found an alginate in seaweed that was able to coat PharmaCyte Biotech announced the The team turned this effect on its by eliminating daily management of and protect insulin-producing beta cells for four months the condition. found an alginate in after transplantation into monkeys without the need for ‘We are proud of the encapsulation immunosuppressant drugs. We are proud of the encapsulation projects that JDRF is supporting and seaweed that was able In 2016, JDRF supported Professor Peter Jones at excited about the potential of all King’s College London in the development of a nano- projects that JDRF is supporting and the research happening in this field to coat and protect encapsulation technique. This involved weaving a web of around the world.’ insulin-producing beta different molecules around sets of islets (groups of beta excited about the potential of all cells) to create an ultra-fine coating to protect them from the research happening in this field cells for four months immune cells – but still allow drugs that are needed to keep the cells healthy to get through. around the world Then there is the macro-encapsulation technique we

Know your Know yourfacts on facts  I n type 1 diabetes, T cells attack the beta cells, resulting in On average, someone is diagnosed with type 1 at the point where your facts HypoBeta activitycells the loss of insulin production just 10-30% of beta cells remain Beta cells

12 TRAVEL SPECIAL TRAVEL SPECIAL 13 RESEARCH FOCUS RESEARCH FOCUS

Visionary project focuses on Who will develop diabetic new treatments for eye disease retinopathy? Dr Richard Lee is an ophthalmologist and immunologist at University College London’s Institute of Ophthalmology. He is leading a JDRF-funded project to develop a test to predict a person’s risk of developing severe diabetic Who When retinopathy, a leading cause of blindness in the UK Dr Richard Lee, August 2018 – University College London July 2020 If we could predict who is most likely to develop retinopathy, we would be able to design ‘smart’ What clinical trials 1 2 3 4 Recruit 60 Take images of Look at different Find a marker participants with their retinas and molecules in the molecule that indicates How might it help people with type 1? different levels of a 20 ml blood blood linked to an risk of retinopathy If we could predict who is most likely to develop retinopathy sample immune cell type progression retinopathy, we will be able to design ‘smart’ clinical trials which are faster and more cost-effective meaning that new treatments can be approved as soon as possible. We will also be able to ensure that those who are at high risk What is retinopathy and why are people with type 1 at risk? attend regular eye tests, and reduce the number of check- Retinopathy is damage to or disease of the retina, a ups for those at lower risk. light-sensitive layer in the eye which is crucial for vision. People with type 1 have an increased risk of developing How important is collaboration in this project? retinopathy as high blood glucose levels can damage the Crucial! Three of us designed and co-lead the project. blood vessels in the retina, affecting its supply of nutrients Dr Dawn Sim is the expert in type 1 and retinopathy who and oxygen, and potentially leading to a loss of vision. is recruiting people through her clinic at Moorfields Eye Why Hospital. To develop the biomarker we’re also drawing What is your project about? heavily on advanced technologies to study the human The team will - It is currently difficult to develop and test new The aim of our project is to create a ‘biomarker’ – immune system through the Institut Pasteur’s Dr Darragh use their findings treatments as there is no precise way of working something that we can measure to tell us which people Duffy. And of course, this project is entirely based on to develop a model out who will develop retinopathy with type 1 are most likely to develop severe retinopathy. using images and blood samples from people with type that can predict To do this, we’ll recruit people with type 1 who have either 1: it would be impossible without their participation. the progression of - If we can find a molecular marker, it would help mild or severe retinopathy and take detailed pictures Overall, collaboration allows us to bring together the best retinopathy in researchers to test new treatments in specially- of their retinas with specialist cameras. We’ll also use of what’s available across institutions around the world a person designed clinical trials state of the art technology to assess the function of their for the benefit of people with type 1. immune cells, such as seeing which genes are switched It could on or off, what kind of proteins the cells are making, and What are the benefits of working with JDRF on a project reduce the what types of molecules are on their surface. We’ll then such as this? number of eye The future look for any patterns in these measurements that are JDRF has been an outstanding charity to work with. As well checks needed found in those with severe retinopathy but not those with as actively helping to shape the direction of the research, for someone mild retinopathy. These patterns will be our biomarker. it has been extremely understanding of some of the found to be at New treatments for administrative challenges in international collaborations low risk retinopathy and fewer eye such as this and has provided us with the support and time checks needed so that we can establish this project effectively. Know  your facts Retinopathy is the most common complication of type 1 Retinopathy

14 TRAVEL SPECIAL TRAVEL SPECIAL 15 AVAILABLE for Android and iPhone1 PUBLIC AFFAIRS GLUCOSE MONITORING Responding THAT FITS to the rise in INTO YOUR DAILY LIFE DIY tech

JDRF is calling for funded training of healthcare professionals to support people using do-it- yourself type 1 diabetes technologies. There has been a rise in the UK in the number of people using do-it-yourself technologies as a way of managing and controlling their condition. JDRF has released a position statement in response.

What is behind the growth in home- may carry some risk. For this Healthcare professionals play an made approaches? reason, JDRF has stated that it important role in the management While research into and the cannot endorse the usage of DIY of a person’s type 1 diabetes – and development of new technologies tech products as they have not that’s true regardless of whether for management of type 1 diabetes been approved for use by regulatory the person decides to manage it See your complete glycaemic ou can automatically share continues, some people have felt bodies - and people use them at via prescribed technology or a 2 picture using a secure, cloud your glucose readings with frustrated by what they feel is slow their own risk. But JDRF has stated DIY solution. That’s why JDRF has based diabetes management caregivers to stay connected progress. They are waiting for the that it respects the rights of people stated, for the sake of the individual market entrance of commercial with type 1 diabetes to choose with type 1 diabetes, that there is closed-loop systems (also known treatments that work for them, a greater need for funded training A convenient way for you to check as artificial pancreas systems or including the use of these for healthcare professionals around your glucose using your phone fully automated insulin delivery DIY technologies. new technological developments. systems). These frustrations have led to some people devising ways to make insulin pumps and CGMs communicate with each other via There has been a rise in the UK ind out more at www.FreeStyleDiabetes.co.uk homemade closed-loop algorithms, thereby constructing DIY systems. in the number of people using What is JDRF saying? do-it-yourself technologies 1. The FreeStyle LibreLink app is compatible with NFC enabled phones running Android OS 5.0 or higher and with iPhone 7 Such DIY tech products are not and higher running OS 11 and higher. 2. For a complete glycaemic picture, scan once every 8 hours. 3. LibreView data can be regulated, and so utilising them viewed in the Safari Browser on Mac OS X Mountain Lion or higher computers and on iOS 6 or higher mobile devices. Currently, uploading of glucose data is only supported on Windows-based computers Minimum system requirements are Windows Vista with IE10 or the latest versions of Google Chrome and Mozilla Firefox, running on a 550MHz Pentium III, 512MB DRAM, 2G Hard Drive, USB 2.0, LCD Screen with resolution of 1024x768.) 4. LibreLinkUp is a mobile application, developed and provided by Newyu, Inc. Use of LibreLinkUp requires registration with LibreView, a service provided by Abbott and Newyu, Inc. Simulated data for illustrative purposes only; not real patient or data. To find out more about our public affairs work, visitjdrf.org.uk/campaigns FreeStyle, Libre and related brand marks are trademarks of Abbott Diabetes Care, Inc. in various jurisdictions. Date of preparation: May 2018. ADCMDP180038e

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CONTINUOUS GLUCOSE INTRODUCING MONITORING Easy way to have fun and ACCURATE REAL-TIME THE NEW GLUCOSE READINGS† fundraise on your birthday ® SMARTPHONE DEXCOM G6. COMPATIBILITY‡ If you have a birthday coming up, why not set up SMALL SENSOR a Facebook fundraiser? Use your special day to make a SIMPLE AUTO-APPLICATOR meaningful contribution to JDRF’s wide range of research projects. You 10-DAY SENSOR WEAR will be giving hope for the future to the 400,000 people in the UK who live with type 1. ALERTS AND ALARMS ZERO* SHARE GLUCOSE DATA § FINGERSTICKS. AGES 2 YEARS AND UP YOUR HELP NEEDED TO INFORM PREGNANCY PROJECT Always know your child’s glucose level and Calling those of you who have a where it's heading with just a glance at your connection to type 1 diabetes and an smartphone or watch.‡ interest in or experience of pregnancy

A group made up of the University of Oxford, The James Lind Alliance, JDRF, Diabetes UK and Diabetes Research & Wellness Foundation would like to speak to you. They are working together to find out the priorities for research in *If your glucose alerts and diabetes and pregnancy. readings from the G6 do The aim is to draw up a list of ten questions about not match symptoms or healthcare and wellbeing in diabetes (of any type) and expectations, use a blood pregnancy that women, their families and friends, and glucose meter to make diabetes treatment decisions. healthcare professionals agree most urgently need research to address. The questions will be shared with † More details on accuracy: Shah VN, et al. Diabetes Technol Ther. research funders to help them support research of high 2018. ‡ For a list of compatible Dexcom.com devices, visit www.dexcom.com/ value in diabetes and pregnancy. compatibility. § Internet connectivity required for data sharing. Following Find out how you can help at npeu.ox.ac.uk/jla-psp requires the use of the Follow App. Followers should always confirm readings on the Dexcom G6® App or Receiver before making treatment decisions. ©2018 Dexcom UK & Ireland. Dexcom UK (Distribution) Find out more about how to get involved at jdrf.org.uk/get-involved Christian and his son Limited, Watchmoor Park, Ethan with T1D Camberley, GU15 3YL (10040080). VAT 241 2390 40. LBL016788 Rev001.

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Tireless, intrepid and resourceful Royal Parks 13 October 2019 – a fantastic effort all round The Royal Parks Half Marathon 2019 in London is a serious contender for the most scenic city run in the world making this event a favourite for runners of all abilities. You’ll run through stunning parks including Hyde Park, Kensington Gardens, and St James’s Park. Be treated to the world famous views of , the Houses of Parliament, the Royal Albert Hall and the London Eye. Run for JDRF and help to raise vital funds for medical research to find a cure for type 1 diabetes. We’ll support you all the way!

Sign up at jdrf.org.uk/event/royal-parks-half-marathon-2019 WALES – Danny Dixon ran the Get LONDON – Matthew King took the Your Kit On challenge on behalf of her NORTH – Katy Roberts and her Get Your Kit On challenge to the friend Lorette, raising £195. Lorette’s family raised £1,300 at their next level. Running 78 miles in 28 daughter Ruby was diagnosed with Type 1 Tea Party. Katy’s daughter, days for his Stepdaughter Sasha, he type 1 at the age of three. Lucy, has type 1. This was Katy’s smashed his fundraising target and first ever fundraising event and we raised £340. think she did a wonderful job! Your energy Paris Marathon and initiative 5 April 2020 The Schneider Electric Paris Marathon 2020 never cease to is one of the most anticipated events in the international running calendar. This incredible amaze us spectacle sees over 57,000 runners from 145 nationalities starting along the world-famous Champs-Élysées before finishing near the MIDLANDS – Jackie MacDonald and spectacular Arc de Triomphe. the team at Roses Florist in Great EAST – Every Friday Greenyard Fresh Barr raised £552.95 by holding a sell fruit to staff and raise money for Sign up at Type 1 Tea Party, complete with a various charities. They donated £500 jdrf.org.uk/event/paris-marathon-2020 huge tombola and raffle. from this initiative to JDRF

Brighton Marathon 19 April 2020 Join us for the Brighton Marathon 2020 and take in the best of Brighton city centre, fabulous stretches SOUTH – Iain Anderson walked 500 miles of coastal road, and panoramic views of the glorious South Downs before a fantastic finish at Madeira Drive SCOTLAND – Lochlan Murdoch, age 10 and then walked 500 more to raise well SOUTH WEST – Jane Madigan from just east of the Brighton Pier. The final mile takes you from Cumnock, raised £7,000 on his over £3,000. He walked his 1,001st mile Devon raised £5,140 during her Make along the Brighton seafront where you will be cheered stadium marathon. Lochlan walked two to a Proclaimers concert. ‘It was a magic a Splash virtual challenge. Jane on by thousands of spectators. miles at every SPL football stadium, night and a very special moment when they completed the challenge for her step- Hampden and Townhead Park. dedicated their final song - I’m Gonna Be Sign up at jdrf.org.uk/event/brighton-marathon-2020 (500 miles) to myself and to JDRF.’ grandson Henry, who has type 1.

20 TRAVEL SPECIAL TRAVEL SPECIAL 21 TAKE PART What’s on Wherever you live, you will not be far from an exciting challenge. So visit jdrf.org.uk/events and do your bit to create a world without type 1 We walk for our son... We’ll do all we can to find a cure for type 1 We make a difference, will you?

Keep on running jdrf.org.uk/runningevents

One Fun Run Central Scotland, 8 September Cardiff Half Marathon 6 October Strathclyde Park Royal Parks Half Marathon 13 October Great North Run 8 September Paris Marathon 5 April 2020 One Fun Run Midlands, 21 September Brighton Marathon 19 April 2020 Drayton Manor Newport Marathon 19 April 2020 One Fun Run North East 22 September

On your bikes jdrf.org.uk/cyclingevents

London to Brighton Bike Ride 15 September

Type 1 Discovery Days jdrf.org.uk/discover

Type 1 Discovery Day, Falkirk FC 25 August Type 1 Discovery Day Glasgow 9 November Type 1 Sports Day, Loughborough 14 September Museum of Rural Life Type 1 Sports & Exercise Day, 19 October Leeds Type 1 Discovery Day 23 November Sheffield

Glitz and glamour jdrf.org.uk/glitz

The One Ball, Manchester, Hotel Football 2 November The Sheffield One Ball 9 November

Community events jdrf.org.uk/communityevents

Yorkshire Three Peaks 27 July One Walk London, OXO Tower, 22 September T1 Towpath Trek, Leeds to Bingley 7 September London One Walk Central Scotland, 8 September Kapow! Superhero Challenge, 6 October Strathclyde Park Manchester One Walk Aberdeen, 22 September One Walk Cardiff, 13 October Lochter Activity Park Sophia Gardens Stadium REGISTER AT JDRF.ORG.UK/ONEWALK JOIN US AND RAISE MONEY TO SUPPORT LIFE CHANGING RESEARCH To sign up to any of our events, go to jdrf.org.uk/events

JDRF is a registered charity in England and Wales (no. 295716) and in Scotland (no. SC040123). 22 TRAVEL SPECIAL A company limited by guarantee (England no. 2071638). Registered office: 17/18 Angel Gate, City Road, London EC1V 2PT.

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