INNODIA Patient Advisory Committee
Patient Advisory Committee
A clear priority of INNODIA is to keep the needs and concerns of patients with Type 1 Diabetes at the center of the project. The involvement of patients is organized by a Patient Advisory Committee.
The Patient Advisory Committee (PAC) gives a voice to the experiences, opinions and desires of the patients and their relatives to help ensure that INNODIA’s goals and strategy are closely aligned with the goals of people living with, and affected by Type 1 Diabetes (T1D). By bringing a powerful patient and family perspective to INNODIA, the PAC helps ensure INNODIA delivers a patient-centric approach and specific outcomes with the potential to improve the lives of people with T1D.
We (the PAC) advise the Management Board of INNODIA, providing input in a number of areas including informed consent, clinical protocols review and relationships with regulatory authorities and patient organizations who are interested in the INNODIA project.
We also help communicate results to a wider public throughout the duration of this 7 year project. Above all, the members of this committee act as T1D ambassadors within INNODIA helping retain focus on what matters most: people living with this disease every day of their lives.. The PAC works with the T1D community, taking their views into consideration for INNODIA.
Through INNODIA’s scientific network, we have the chance to connect with more than 15 European countries and the possibility to connect with patients from these countries.
The Members of the Patient Advisory Committee
Johan Keurentjes (1967) I was diagnosed with T1D at the age of 11. I live in Bussum, The Netherlands and I am married and the father of two sons and a daughter. I am a director and co-owner of an e-commerce agency and I have completed 9 marathons.
Kyle Jacques Rose I was diagnosed at the age of 16. I live in Aix-les-Bains, France in the foothills of the Alps. An engineer by training, I am now a specialised consultant in healthcare. My work involves the promotion of sport and healthy lifestyles leaning on my prior experience as a pro athlete. I am a big believer in new treatment/technology and was very excited to experience a closed-loop Artificial Pancreas trial in Montpellier France!
Olivier Arnaud (1955) I am not personally diabetic but really concerned by young children and adults in my close family and friend circle having type 1 diabetes. I share with them their stressful life and the hope for having a cure. I am proud to work for JDRF Research that I am representing in Europe and help in their vision of having a “world without T1D”.
Jaivir Pall (1994) I was diagnosed at the age of 4. Since a young age I have had an interest in supporting people living with diabetes like me! I now work in the national health service in Brighton, UK but support services across the UK. I believe strongly in Europeun collaboration and sharing our learning leading me to work on a project called diabetes youth advocates europe and learning from young people with diabetes from across Europe. I have swim, run, dived, flown and driven in support of diabetes research (not all at the same time!!).
Dries Van Herzele (1976) I live in Linden, Belgium and I am married and the father of three sons and a daughter. Unfortunately, my daughter was diagnosed with T1D in 2013 on the age of 11 and as parents we follow her closely.
Veerle Vanhuyse In less than two weeks from now, I will be celebrating my 33th ‘Diaversary’. On my 16th birthday, I took my first insulin injection. With a glycemia of 640mg/dl, I can truly say, I had a ‘sweet 16’. Recently I started working as communication representative for INNODIA & GPPAD, which I’m very excited about, since I get to meet top level scientists all over Europe, gathering forces to fight T1D. I love my job, my two girls and my running. So far, I finished 6 marathons and with two of them I raised money for children with diabetes in developing countries. Proud to be part of the PAC!
Manon Perquy Hi, I am Manon! I live in Bruges and study at the University of Ghent (Belgium). At the moment I am finishing my master’s degree in Clinical Psychology. I was diagnosed with T1D when I was 11 years old. As I was the only one in my family it was a lonely journey in the beginning. Fortunately I got to meet some amazing companions along the way which made me feel proud to be a T1D patient. Considering my education and the disease I am dealing with, I have always been interested in the mental health aspect of T1D. For me, joining PAC means receiving new insights on T1D as well as being part of a group that contributes to diabetes research. Being part of PAC, I hope to push forward the mental aspect of the disease.
Maj Langerholz My name is Maj. I'm 18 years old. I live in Slovenia. I have been diagnosed with type 1 diabetes for close to 12 years now. I haven't had many issues with diabetes, my Hba1C levels are almost always under 7,0% thanks to my regular sporting activity and a bit of help from my parents at the start, so I developed my knowledge regarding diabetes from a young age. I'm in my last year of high school and I’m planning to become a nurse. Having been in and out of the hospital through my life with a couple of other health issues, I learned a lot about medicine and have always been fascinated by it. I regularly play and train tennis and basketball. My activity often lowers my sugar a lot, resulting in hypoglycemia’s, but that's an issue I'm working on as much as possible. And the fact that devices for better care are improving so fast, I know it's only a matter of time until that worry goes away. I'm excited to be joining such a wonderful and kind team for diabetes research and development.
Frédéric Lelieur I discovered about T1D in November 2017 when our daughter was diagnosed at the age of 2. History repeated itself 3 years later, when our son was also diagnosed, at the age of 7. Ever since I heard about T1D, I’ve tried to stay informed about research and prospective treatments, with a duty to make these available to our kids whenever available. I live in Lausanne, Switzerland. I am married and the father of 2 daughters and a son. I am a finance professional enjoying outdoor activities in the mountains with the family all year round, and making sure T1D will never stop us from starting new adventures!
Francesca Ulivi My 40th birthday brought me the diagnosis of type 1 diabetes, 12 years ago. I was a workaholic journalist, editor in chief, general manager of media companies. Then, I decided to utilize in a better way my time and devoted my life to communicate our disease in order to fundraise the cure. With one step further I embraced the political carrier to ameliorate policies for anyone living with a chronic disease or a disability. I’m CEO of the Fondazione Italiana Diabete and recently appointed as member of the local Government of the Milan City Center, in Italy, with the responsibility of welfare and territorial health. I believe in social media groups to help, support and empower PWD, that’s why I also serve as administrator in the biggest Italian group of PWD called Portale Diabete. So proud to be part of the PAC!