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!

Get to know us – Mandy Wäldchen

And on we go with our OPEN team introduction series – with Mandy Wäldchen. She will tell us about her struggle with beta cells and about more prosperous events in her life.

Hi everyone,

my name is Mandy Wäldchen. I was born in Berlin but grew up in a rural area close to Lutherstadt Wittenberg. Having always been fascinated by the beauty of nature and interested in understanding the underlying mechanisms of life, I studied Biology (B.Sc.) at Leipzig University and subsequently continued my Master’s studies in Biochemistry with focus Biomedicine (M.Sc.).
During my studies, I performed a Research Traineeship at Stockholm University and fell in love with Scandinavia.
Because of my interest in diabetes research I worked with pancreatic alpha and beta-cells for my Master’s thesis. Unfortunately, experiments didn’t go well, since my beta-cell cultures always died during the experiments (because they had already been contaminated in the stock – as we found out… later). Accepting that I obviously have bad karma with beta-cells (my personal beta-cells died, too), I switched to a more technological approach in diabetes therapy and worked as a technical consultant for insulin pumps, glucose sensors and sensor-augmented pump therapy at Medtronic.

A further education in Life Science Management provided me with insights into the Life Science Industry sector of pharmaceutical and medical technology companies; more specifically the conduct of clinical studies and the required regulatory pathways of drug and medical device approval.

Currently, I am a researcher in the OPEN project, mainly affiliated with work package 1 that aims to investigate the clinical outcomes of DIY-Artificial Pancreas Systems (DIYAPS). Here, I found the perfect fit for my interests in diabetes research and a project that indeed has a positive impact on everyday’s life of people with diabetes.

But what I enjoy most about being part of OPEN is the enthusiastic team driven by the common intrinsic motivation to improve lives of people with diabetes. Furthermore, I appreciate the interdisciplinarity of the team allowing different perspectives and a holistic view on living with this complex disease.

Above all, I am really impressed by the DIYAPS technology and movement proving what can be achieved when such engaged people collaborate in a community in order to ease the burden of living with their disease, support their beloved ones and offer peer support. Thus, I feel honored and grateful for being part of this movement.

Personally, I love nature, books, coffee, good company, music, dancing and running (without any emphasis on the order and preferably in various combinations 😊).

During my semester in Sweden, a roommate took me to my first folk session in a very mysigt (cozy) club in Gamla Stan where I fell in love with Scandinavian folk music. Back to Leipzig, I stumbled into the Balfolk community which combines folk sessions with dancing to a potpourri of dances from all over the world (particularly from France, but more broadly also from Scandinavia, Portugal, Spain, Italy, Ireland and Israel – just to name a few).

Besides discovering the musical culture and rhythms of the world by Balfolk dancing, I love to travel different countries and get to know various cultures and landscapes of this beautiful planet.

Additionally, I am a passionate runner. For me, running is a good source of endorphins and helps to keep my blood sugars in range. I started with half marathons in Leipzig and Stockholm, then I continued with running several marathons in Leipzig and Berlin.

However, the most special one was the marathon taking place on my 30th birthday in the city of my birth, Berlin (kairos-like magic timing 😊). It was a great experience to pass through Brandenburg Gate after 42km – where there had been a wall at the time of my birth in Berlin and which fortunately isn’t there anymore. So, please do not build walls again and be OPEN-minded 😊

Thank you, Mandy, for your interesting bio and your inspiring words! We are happy that those dying beta cells never got you down and that, instead, we have you with us!