Patient Podcast

Patients Podcast: IBD

VMLY&R Health — Tue, 20 Sep 2022 12:54:29 -0500

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

Patients Podcast: Autistica

VMLY&R Health — Tue, 20 Sep 2022 12:50:00 -0500

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.

Patients Podcast: Neuromyelitis Optica

VMLY&R Health — Tue, 20 Sep 2022 12:48:25 -0500

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.

Patients Podcast: Gastrointestinal Stromal Tumour

VMLY&R Health — Tue, 20 Sep 2022 12:27:23 -0500

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.

Patients Podcast: Duchenne Muscular Dystrophy

VMLY&R Health — Tue, 20 Sep 2022 12:25:04 -0500

On today’s episode of Patient Podcasts, we are joined with co-founder and CEO of Duchenne UK, Emily Reuben. After her eldest son was diagnosed with Duchenne muscular dystrophy (DMD), she established the Duchenne Children’s Trust. The charity joined forces with Joining Jack and is now Duchenne UK. Since 2012 they have spent more than £17 million on accelerating the search for treatments and a cure for DMD, and have set up groundbreaking and award-winning collaborations, turning Duchenne UK into the UK’s largest funder of DMD research. Emily is a recognized advocate on behalf of DMD patients around the world in meetings at the FDA, EMA, MHRA, NICE and SMC. She was praised in the House of Commons for the charity’s work by the Minister for Life Sciences, and in 2017 Emily and her co-founder Alex Johnson were awarded a Points of Light award by the Prime Minister for their passionate work.

Patients Podcast: Young Adult Cancer Support

VMLY&R Health — Tue, 20 Sep 2022 12:23:12 -0500

On today’s episode of Patient Podcasts, we are joined with Founder and CEO of Trekstock, Sophie Epstone and Jemima Reynolds, Health Programs and Engagement Lead, to discuss the hurdles young adults with cancer face. Every day in the UK, 34 young adults are diagnosed with cancer. Trekstock’s goal is a future where anyone in their 20s or 30s who has heard the words "it's cancer" is given tailored support that matches their unique needs. Trekstock is the only charity that offers tailored support to this age group of cancer patients and work to tackle social isolation and improve quality of life through and beyond their treatment. Getting diagnosed with cancer is like becoming part of a club you never wanted to join - but know they are there to help you figure it out. Community is at the heart of the work.

Patients Podcast: Digestive Diseases

VMLY&R Health — Tue, 20 Sep 2022 12:13:36 -0500

On today’s episode of Patient Podcasts, we are joined with CEO of GUTS UK, Julie Harrington, Guts UK is the only UK charity funding research into the digestive system from top to tail; the gut, liver, and pancreas. People are suffering. People are dying. All because of a lack of knowledge about our guts. Guts UK exists to change that. Our guts have been underfunded, understaffed, and undervalued for decades. Together, we will join forces and bring about important change in this misunderstood area of health.

Patients Podcast: Skin Cancer and Melanoma

VMLY&R Health — Tue, 20 Sep 2022 12:07:39 -0500

On today’s episode of Patient Podcasts, we are joined with Diane Cannon, from Melanoma UK. Diane is the Liverpool arm of Melanoma UK and became a melanoma patient advocate in 2013 following the death of her young niece, Claire. In 2016, building on more than 25 years in the corporate world and a further 10 years of running her own business Diane became our Corporate Partnership Director. In this episode Diane discusses how she came into her role at Melanoma UK and options for supporting patients, careers, family and friends and regaining control.

Patients Podcast: Alkaptonuria and Obsessive Compulsive Disorder

VMLY&R Health — Tue, 20 Sep 2022 12:06:21 -0500

On today’s episode of Patient Podcasts, we are joined with Nick Sireau, CEO & Chairman of the Trustees at Alkaptonuria Society (AKU). He sat down with us, to discuss the challenges of living with AKU with the loss of mobility and pain affecting the patients’ physical and mental health. AKU Society aims to provide reliable, up-to-date information about AKU, individual home support visit and provide ongoing support at the National AKU Centre (NAC) for DevelopAKUre patients.

Patients Podcast: Turner Syndrome

VMLY&R Health — Tue, 20 Sep 2022 12:03:35 -0500

On today’s episode of Patient Podcasts, we are joined with Arlene Smyth, Executive Officer of Turner Syndrome Society UK. What is Turner Syndrome? Turner Syndrome (TS) is a chromosome abnormality affecting only females, caused by the complete or partial deletion of the X chromosome. The incidence of TS is approximately 1:2000 live female births. The Turner Syndrome Support Society is a national charity caring for the needs of those with Turner Syndrome throughout the United Kingdom.

Patients Podcast: Brain Tumor

VMLY&R Health — Tue, 20 Sep 2022 12:00:34 -0500

On today's episode of Patient Podcasts, we are joined with Gina Almond, Director of Fundraising at The Brain Tumour Charity. The Brain Tumour Charity, the world's leading brain tumour charity and the largest dedicated funder of research globally.