Get to know us – Timothée Froment

In the meantime, we have several newcomers to our OPEN team. First of all, Timothée will introduce himself to you.

Hello, hello, my name is Timothée, I am 28 years old and I have been living with diabetes since more than 14 years.

Together with Katarina Braune I was the European Chair of the Young Leaders in Diabetes Program. This program has been an incredible personal and professional incubator where I also had the chance to meet Shane O’Donnell and Bastian Hauck. All three members… well, roots of the OPEN project.



Until I know if I´m going to choose a loop, I am one of the people with type 1 diabetes that still use pens with different types of insulin and multiple injections per day. I have never been able to solve my internal conflict between the freedom of not constantly wearing a pump versus being without injections. The injections have won so far, let’s see if participating in this team will change my mind or not??!!

Aside from my diabetes-related story, I grew up in sub-Saharan Africa (Gabon, Congo, Cameroon and others) until the age of 14, before landing in my ‘country of origin’, Belgium. I have a BA in Social Care Studies and worked as an educator in an association that sailed with young people facing different kinds of difficulties – including T1D. Then, I studied in the UK for my MA in Education (International Education) and even though this topic is not directly linked to the aims of OPEN, I became familiar with qualitative methods and research – which OPENed the door to OPEN. Therefore, I am mainly working on work package 4 – barriers to scale-up.

Nevertheless, after my MA I really wanted to go back and LIVE in Africa. It took me some time to figure out how I wanted to do that. So, I went from internships to small jobs – between Chad, Belgium and Benin – trying to figure out what to do and where to do it. At the beginning of 2018 I decided to quit my job in Belgium and try to build my own project. This led me to try and set up an eco-lodge in northern Benin – and offer motorbike tours in the mountains. I created a company, had the land to start with, but, sadly, there was an attack that resulted in a guide being murdered and two tourists being abducted. The foreseeable consequences of this is a slowdown (massive slowdown) of activities in the touristic sector. I had to put my hopes and dreams in my pocket for a while.


So, I returned to Belgium with a bag full of questions. Research has always been something that I particularly enjoyed doing. Katarina talked to me about the project and secondment. I saw that I could join in two things that I feel passionate about, diabetes and research. In addition, I felt that I could really help and that the working methodology would suit mine. Also, I always kept the idea of a PhD in mind, and coming back to research could be a nice step towards this – even if the topic is still a bit blurry.


I like to travel, read, wander about in unknown places, and comfort myself by telling others that I like running. On some days I am highly social and on others I can be a real hermit. I like deep talking under the sun on a terrace with a beer in my hand. Get lost trying to find my way. The rhythm of the sea.

Finally, please be sure that I am both honoured and excited to be working in such a project with such objectives, such methodology, such incredible people AND such a fantastic community.

Tim

Thank you, Tim! We are very happy that with you we have another passionate, skilled, pleasant and humorous person in our team!

Get to know us – Katarina Braune

Today, Katarina, one of the most charming #WomenInScience will tell us a bit about herself and her ambitions.

Hi! I am Katarina, MD and researcher at Charité University Medicine Berlin, Germany, and living with T1D for 19+ years.

I was diagnosed with type 1 diabetes as a kid, and have always been an early adopter when it comes to new technologies – I was one of the first Paediatric patients with an insulin pump at the time. Later, when CGM was introduced to the market, it was all I asked my parents for as birthday and Christmas presents. When I first read about Looping in 2017, I knew immediately that I had to try it, but also that I want to contribute to further improve it. DIY Looping has certainly turned my world upside down (in the best way possible).

“Do-it-Yourself” is not “Do-it-Alone”

The diabetes online community has helped me to deal with my own diagnosis and has turned life with diabetes into something beautiful and meaningful. Meeting knowledgeable and committed people with T1D all over the world has inspired me to become a diabetes advocate, and has ultimately influenced my decision turn my passion into profession and become a Paediatric Endocrinologist and diabetes researcher. Still in my teenage years, I started to produce educational material online and create a space for young people with T1D to connect online. Later on, I joined the “IDF Young Leaders in Diabetes” programme, where I have also met Shane O’Donnell, who is now coordinator of the OPEN project. Ever since I started as a volunteer in diabetes advocacy, my urge to make the world a better place for people with diabetes just never stopped, and over time the diabetes community has become my family.

Making technology accessible and applicable

Making both, healthcare and technology, more accessible and applicable is another thing I am passionate about. As co-chair of the Berlin chapter of the NGO Hacking Health, I organize hackathons and workshops with the mission to break down barriers, prototype patient-centric solutions and generate lasting impact in healthcare.

Whenever I am not researching or advocating, I am most likely to travel the world, which is my favourite way of unplugging from our busy and connected lives once in a while. My favourite visits so far were rail travels and road trips through Georgia, Iran, Oman, Japan, South Africa, Canada, and California – just to name a few.

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”

As part of the OPEN team, I am co-leading the medical team together with Prof. Raile, and hope our research can lead to a better understanding of safety and efficacy of DIY artificial pancreas systems, and am investigating how closed-loop systems still need to be alterated and improved for certain user groups. The #WeAreNotWaiting movement is a great chance for academia and industry to learn from the diabetes community and to translate it into their own work without the constraints of clinical trials. As many OPEN team members are both, researchers working in academia, and T1Ds using a DIY artificial pancreas, I hope our project can help facilitate that dialogue.

Thank you very much for sharing major parts of your life with us, Katarina. The OPEN team is very happy and proud to have you with us and to be inspired by your ambitions!

Get to know us – Renza Scibilia

Renza is an OPEN team member from – European view – far, far away but nevertheless very easy to hear: In her charming way she gets to the heart of things and insists on clarifying and improving views on a life with type 1 diabetes. There is a lot more to say about her, but lets just hear it from herself:

Hi! I’m Renza and I’m from Melbourne Australia – miles away from pretty much everyone else in the OPEN Team. Nonetheless, I’m pleased to be part of it all – and not just because I get bragging rights when it comes to being exhausted with jet lag whenever we meet.

I was diagnosed with type 1 diabetes in April 1998, and since 2001 have worked for diabetes organisations where I spend a lot of time banging on about the importance of including people with diabetes in each and every sort of activity that involves us – healthcare, diabetes activities and services, research, education. If it’s for us, include us in the planning of it. If I was the tattooing type, I’d have #NothingAboutUsWithoutUs boldly inked somewhere very obvious! Alas, I am not, so I just spend a lot of time saying and writing it to anyone and everyone who will listen or read about it.

I started using Loop in August of 2017. It was truly the most positive thing I have ever done for my diabetes management. Diabetes and I co-exist far more happily since I’ve been Looping because it now takes far less mental and physical energy to deal with. While I can’t say that it’s like not having diabetes anymore, it certainly has made the burden of diabetes the least it has ever been for me. I cannot stress enough how life changing that has been.

As soon as I started Looping, I wanted to tell everyone about it! I wrote about it on my blog (see here), gave updates on my social media accounts, spoke about it to others living with diabetes, and gave one of the first Australian presentations about DIYAPS technology to healthcare professionals. That session earned me the label of being ‘Deliberately non-compliant’ (coined by another OPEN Team member, Tim Skinner) after the HCPs in the room were horrified at what they were hearing. Thankfully, things are slowly changing. And I wear that term as a badge of honour these days!

I was asked to be part of the OPEN Team from the beginning and I am so pleased to be involved. The OPEN Project is the very definition of the #NothingAboutUsWithoutUs philosophy, and I am so proud to be part of something that truly is for and by people with diabetes. I bring to the team my experience of working within a diabetes organisation to navigate the tricky waters of discussing a diabetes treatment option that is not regulated. I’m extraordinarily proud that Diabetes Australia developed the first position statement on DIYAPS where we very clearly state that people with diabetes should have the choice to use this technology and continue to be supported by their healthcare team.

Diabetes is certainly not the most significant thing in my life and it never will be. I love that Loop has given me the chance to focus on the people and activities that are far more interesting and important. My husband and daughter also appreciate how much less diabetes intrudes, giving us more time and energy to do the things we enjoy. We travel a lot, spend a lot of time searching out great places to eat and drink coffee, chase around our pesky and cute pups, explore bookstores and guitar stores around the globe and listen to a lot of music. See? All things that are far, far more interesting than micro-managing glucose levels!

We are very happy and proud to have Renza with us!