Community Researcher Cooperative

Amanda Jones

Amanda has the rare disease Tracheobronchomalacia sometimes called EDAC. It is a secondary disease from Relapsing Polychondritis which affects 3 in a million and she has been using CPAP since 2021.

She works hard advocating for disability in a variety of ways through panels, collaboratives and charities. Including locally and nationally.

As an author, editor, graphic designer and proofreader Amanda shares her skills throughout her work. She enjoys music, art, crafts and cares for nature.

Mitch Coles

Hey, I'm Mitch! I'm a community researcher and have been a disability/activist for over 10 years and I've been disabled for much longer than that. I owe my life to my young children, who are the biggest reasons I get out of bed in the morning.

If I can get out there, make some positive changes and be known as the guy who usually speaks his mind for the greater good, that's enough for me. I also really love doughnuts.

Libby Bligh

Hi my name is Libby and I'm from Scotland. I'm using my lived experience of using a ventilator to help others share their stories.

Ruth Bridgens

Having to give up the beginnings of an art career in my 30s because of rapidly increasing muscle fatigue years, after having had mild childhood polio, I became involved in researching polio as it was difficult to get a postpolio diagnosis at that time.

This eventually led to a PhD in medical sociology from Cardiff University, exploring biographical narratives of people who had polio. As my postpolio muscle fatigue increased, I needed a wheelchair, then began to have sleeping and breathing problems, and after six years of misdiagnoses, I was eventually diagnosed with hypoventilation and started using BiPAP. My difficulties with diagnoses and experience with deeply moving polio stories made me particularly interested in working in a team of people using ventilation, interviewing others and learning from their experiences.

Conor O'Kane

Hey, I'm Conór. I'm 37, and I am from N. Ireland. I have been using a tracheostomy from the age of 4, and I have lived experience within the respiratory world. I am looking forward to learning and developing my knowledge by being involved within this research project.

Jenny Negus

Hi I’m Jenny, I’m 48 years young and have had chronic respiratory problems for nearly 30 years. I have used non-invasive ventilation for several years and am looking forward to hearing about other peoples experiences with it. I hope our research can raise social awareness and understanding of the impact that home ventilation can have.

Haffizah Ali

Hi, I'm Haffizah from Nottingham, and I'm excited to be a community researcher for Cripping Breath. I'm passionate about helping break the stigma surrounding ventilation and showing how it can positively enhance people's lives.

Connor Thompson

Hi, I'm Connor and I'm 23 years old. Currently I live in Nottingham. I have lived overnight ventilation experience for over 15 years. I have also been part of multiple ventilation projects like implementation of mouthpiece ventilation, oxygen mounted ventilation etc… I’m happy and excited to be a part of this project. I look forward to having conversations with other ventilation users and developing useful research and data to improve the quality of life for all ventilation users.

Sarah Waters

Coming soon!