Research Champions

I've had Crohn's since I was 7 years old and went through plenty of tough times. I'm now enjoying much better health and that's in no small part due to the development of new medicines and an improved understanding of the disease. I'm therefore keen as a Research Champion to share my experiences and bring forward the patient perspective to aid high-quality research. I'm especially eager to see new research on the causes of the disease, as well as on fatigue and the role diet and exercise play. I'm passionate about supporting younger folks with Crohn's or Colitis, tapping into my own history where possible. I've already taken part in a few studies and felt like I was making a genuine impact. I'm excited to see what the coming years will bring and am actually quite optimistic that we'll see a cure in a few decades!

Since being diagnosed with Crohn’s disease at 22 and having surgery at 23, it has been a major adjustment to get back to feeling like myself. I was diagnosed at the beginning of my last year of my nursing undergraduate in 2018 and I am now a 4^th year medical student in the West Midlands. I turned to research during the early stages of being diagnosed to help me cope, and I use research now to stay up to date on new advancements. I want to help people with IBD not feel overwhelmed by research and to show how beneficial it can be. It is important for researchers to hear how IBD affects our day to day in order for their research to accurately reflect us. Being a former nurse and now future doctor with IBD has helped me immensely in being able to understand the difficulties patients face when living with a chronic condition and the importance of research in treatment decisions and management.  In the Research Champion role I aim to bring the patient perspective and voice to help researchers understand the lived experiences of people with IBD.

I became a Research Champion in order to help create a voice for younger people living with Crohn’s and Colitis in the UK. As someone who was diagnosed with Ulcerative Colitis in their early teens, I often felt like a lot of my questions were going unanswered, and by participating in this role it is my aim to close that gap between uncertainty and diagnosis in patients. Research is the most important way to do this - there is nothing more important than finding out about different peoples’ experiences in order to help progress with our understanding of Crohn’s and Colitis.

I’m a huge believer that the best solutions come from working closely with the people they’re designed for. I put this into practice in my day job, working closely with employees to help their employers make the right changes to their workplace. As a Research Champion, I hope by sharing my experience of living with Crohn’s Disease, I can help the wonderful people trying to build understanding and improvements in the complex world of IBD.

Becoming a Research Champion for Crohn’s & Colitis UK is an exciting opportunity to help drive the research field forward. As a current analytical chemistry PhD student with a research focus on gastrointestinal disease, I have come to understand the importance of patient-focused research in shaping meaningful scientific outcomes. Joining forces with IBD researchers and this incredible organisation in their mission to advance research will help transform research decisions to change the lives of those affected by IBD. While having Colitis myself comes with its challenges, it has also brought many opportunities to help make a difference. I am passionate advocate for IBD and believe in the power of advancing disease knowledge, raising awareness, and building a supportive community. There is so much great research being carried out in the field and I’m grateful for the opportunity to be part of that.

I applied to become a Research Champion after years as a patient representative in research studies, giving my perspective and sharing my experience of living with Crohn's for over 20 years. My journey made me feel like I had a lot of advice to offer to the Crohn's and Colitis community. The studies revolved around characterising symptoms, defining and measuring outcomes in care and treatment, helping clinicians and researchers understand the experience and impact of living with IBD, and coming up with up with quality-of-life measurements. More recently, I have found myself being drawn beyond clinical treatment, into the wellbeing aspect of care. Overall, I have found being involved in research to be very positive, rewarding, uplifting and encouraging, giving me hope that by volunteering on behalf of Crohn's & Colitis UK to support researchers, we will be able to improve lives.

My son Charlie was diagnosed with Crohn’s in 2021 at age 13, and with no known family history, this came as a huge shock. Charlie’s resilience over the past 20 months has been remarkable as he experiences the physical and psychological impacts of Crohn’s. Since diagnosis, the Crohn’s and Colitis UK website and resources have been invaluable to my family in increasing our understanding. I believe research is crucial to supporting and advancing Crohn’s and Colitis treatment. As a Research Champion, I want to contribute to research by sharing my family’s experiences and perspectives to help others.

I became a Research Champion to provide a voice for patients as well as for healthcare professionals.  I have had Ulcerative Colitis for 5 years now and the experience is teaching me so much about myself, the impact on the people around me and how health is perceived in the world.  I hope to break down barriers to care through my unique position to drive research that really puts the patient at the centre of care.  Research serves as the blueprint for how healthcare is conducted and through this, we can influence positive change to grow and share insights into people’s experiences and build greater awareness of IBD.

I'm looking forward to being involved in the research process, bridging the gap between patients, researchers and clinical staff.  As a person with Ulcerative Colitis, I'm passionate about raising awareness on IBD and highlighting the importance of research.  Being able to use my own personal IBD experiences and knowledge to assist with research.

I'm currently involved in the AWARE-IBD Patient Oversight Committee, this research project is to improve patient care in Sheffield with a view to rolling out changes across the UK.

I became a Research Champion because having Ulcerative Colitis has made me acutely aware of how vital Inflammatory Bowel Disease Research is. There is still so much to discover about IBD in order to continue to develop effective treatments. For the last few years I have been a co-applicant and provided public patient involvement on an IBD Study and I hope through the Research Champion role to be able to raise awareness of more IBD Research and the fantastic work that Crohns & Colitis UK does. It means so much to me to be able to contribute in this way to exciting new research that will ultimately improve the lives of those of us living with IBD.

I believe the best outcomes will come through active involvement with research initiatives. I hope applying my personal experiences with Crohns disease, surgery and medications will contribute to positive benefits in the longer term. My motivation for participating as a Research Champion is to positively advance the patient context of how IBD affects family, careers and general health. Although the scope of IBD is so varied many of the patient concerns are common but not widely shared, I’d like to help change that.

Advocating for research has been part of my career for the last 10 years, around the same length of time that I've been living with Ulcerative Colitis (UC). I'm really excited for these two parts of my life to intersect, and to champion research to further the understanding of UC. It's taken me a long time to accept this disease and I'm still learning to live with it; each day can present a new challenge, but I'm hopeful that through this role we can develop knowledge, insight, and awareness.

Hello, following surgery for Crohn’s I have lived with the effects of IBD for over 20 years and have benefitted from the fruits of research in various ways. I am grateful to have this opportunity to raise awareness of Research and of Crohn’s & Colitis UK and to help link the Crohn’s and Colitis Research Team to research partners. My career began in community & adult education then, following redundancy from a management position in that field, I gained an M.Sc in IT and recycled myself as a computer analyst/programmer. Now retired, I enjoy gardening, pilates and sports.

I became a Research Champion because I feel research is the cornerstone to moving forward in supporting people living with Crohn's and Colitis. I have lived with Ulcerative Colitis for more than 15 years. By increasing knowledge and understanding in the field from physical symptoms to the psychological impact it can have, we can hopefully move nearer to a place with less illness.

My background in nursing will hopefully support this role when discussing my own lived experience of Ulcerative Colitis with those living with the illness, researchers and clinicians. I am a fluent Welsh speaker and I hope this will allow some people to communicate more freely in their mother tongue about their experiences.