On today’s episode of Patient Podcasts, we are joined with Seb Tucknott, Founder and CEO of IBDrelief. Tucknott was diagnosed with ulcerative colitis in 2008 and spent several years taking various medications. IBD is a chronic (lifelong) condition in which parts of the gastrointestinal tract (the gut) become inflamed. Seb founded IBDrelief in 2015 with the goal to create a website that shared experiences of people with the condition, and to provide supportive tools to help himself as well as others struggling with the condition 

On today’s episode of Patient Podcasts we are joined with James Cusack, Chief Executive at Autistica UK. James joined Autistica in September 2015 as Director of Science following a career in autism research at the University of Aberdeen. For many years, James has worked directly with families affected by autism as well as gaining experience in clinical, educational, and social care settings. James has sat on a number of advisory panels discussing the role of research in autism, and was vocal in the production of the report, 'A Future Made Together'. He was part of a core stakeholder group which successfully campaigned for Scotland’s first ever autism strategy and became Chief Executive in 2020 and is the first openly autistic CEO of a major charity.

On today’s episode of Patient Podcasts, we are joined with Sumaira Ahmed. In the summer of 2014, Sumaira was diagnosed with sero-negative neuromyelitis optica spectrum disorder (NMOSD)/chronic relapsing inflammatory optic neuritis (CRION) after experiencing sudden and severe vision loss and weakness/numbness. Less than two months after her diagnosis, she founded The Sumaira Foundation (TSF) dedicated to generating global awareness of NMOSD and MOG-AD, supporting research to find a cure, patient advocacy, and creating communities of support for NMOSD and MOG-AD. Sumaira has huge plans for the foundation and in this episode we find out more about what drives her. 

On today’s episode of Patient Podcasts, we are joined with Vice Chair of GIST Cancer UK, Jayne Bressington who is also the Patient Director for PAWS-GIST. GISTs (Gastrointestinal Stromal Tumors) are malignant tumors of soft tissues in the gastro-intestinal tract (the stomach and intestines). They are a kind of sarcoma, which is a very rare type of cancer. Around about 2% of tumors in the gastrointestinal area are GISTs. 

GIST is the only UK based charity solely devoted to GIST cancer. When Jayne's 15-year-old daughter Eve was diagnosed with Pediatric/Wild-type of GIST it was the worst news her family had ever received. Very little was known/available to patients with this diagnosis in the UK. In June 2010 Jayne & Eve attended the Pediatric, Wild-type GIST Clinic in Washington DC, hosted by Dr Su Young Kim and Dr Lee Helman. Inspired, Jayne felt determined that UK patients should also have this facility.