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Pompe Support Network
United Kingdom
เข้าร่วมเมื่อ 22 เม.ย. 2020
Pompe Community at WORLD Symposium 2023
A short video to highlight enormous benefits to national patient organisations of attending international conferences such as this.
มุมมอง: 255
วีดีโอ
Virtual Reality and Health
มุมมอง 662 ปีที่แล้ว
Katie Hoolahan talks about how her company, VR Healthy, can design a programme of VR experiences for enjoyment and to improve the physical and mental health of people with health conditions.
Tony talks about raising awareness of Pompe disease
มุมมอง 1162 ปีที่แล้ว
Tony describes his symptoms of Pompe disease, the importance of support groups, and his enjoyment from being part of the Pompe & Circumstance choir, and raising awareness of the condition in this way. More on Pompe support here: www.pompe.uk
Lin talks about Pompe, and Circumstances that led to her diagnosis
มุมมอง 1112 ปีที่แล้ว
LIN talks about symptoms caused by Pompe disease, her journey to getting a diagnosis, the support she receives from her husband, and her excitement at being part of the Pompe & Circumstance project. More on Pompe support here: www.pompe.uk
Gemma on living and singing with Pompe disease
มุมมอง 1792 ปีที่แล้ว
Gemma describes how Pompe disease affects her daily living. She discusses the importance of the Pompe community, the Pompe & Circumstance choir, and newborn screening for infants born with the condition. More on Pompe support here: www.pompe.uk
Pompe & Circumstance film documentary
มุมมอง 2672 ปีที่แล้ว
Short documentary about the making of Pompe & Circumstance by the UK Pompe community. Featuring Pompe Support Network, Carrie and David Grant, with a choir of individuals living with Pompe disease, family, friends and staff from the NHS and Sanofi UK.
Pompe & Circumstance Performance
มุมมอง 4552 ปีที่แล้ว
The UK Pompe community joined Carrie and David Grant, friends, family and staff from the NHS and Sanofi UK, to record this powerful and uplifting chorus to Edward Elgar's Pomp and Circumstance march. Please sing along to "Give us Hope and Glory!" More on Pompe support here: www.pompe.uk
PompAbility: Director's view
มุมมอง 772 ปีที่แล้ว
Allan Muir talks with his son about the series of short films they created together.. The PompAbilty film series can be viewed from the Pompe Support Network website: www.pompe.uk And also on the Pompe Support Network TH-cam channel.
PompAbility: Episode 5, Celia
มุมมอง 2922 ปีที่แล้ว
Auto-translate does not work in the TH-cam App. To translate our videos, watch them within our webpage or on a desktop computer. PompAbility is a series of short documentary films illustrating people living with Pompe Disease, a rare neuromuscular condition. Celia, or Baroness Thomas of Winchester, is a Liberal Democrat peer in the House of Lords. She was misdiagnosed for many years, receiving ...
PompAbility: Episode 4, Jeff
มุมมอง 4622 ปีที่แล้ว
Auto-translate does not work in the TH-cam App. To translate our videos, watch them within our webpage or on a desktop computer. PompAbility is a series of short documentary films illustrating people living with Pompe Disease, a rare neuromuscular condition. Jeff explains how numerous mis-diagnoses across the years took its toll on his body and how earlier diagnosis and treatment might have ben...
PompAbility: Episode 3, Wayne
มุมมอง 8562 ปีที่แล้ว
Auto-translate does not work in the TH-cam App. To translate our videos, watch them within our webpage or on a desktop computer. PompAbility is a series of short documentary films illustrating people living with Pompe Disease, a rare neuromuscular condition, . Even through dark times, Wayne's positive outlook has allowed him to help many people within the Pompe world, and here he shares how his...
PompAbility: Episode 2, Oscar
มุมมอง 9772 ปีที่แล้ว
Auto-translate does not work in the TH-cam App. To translate our videos, watch them within our webpage or on a desktop computer. PompAbility is a series of short documentary films illustrating people living with Pompe Disease, a rare neuromuscular condition, . Episode 2 highlights Oscar's early struggles with Pompe Disease and the issues he encountered in finding his place in life. Oscar has si...
PompAbility: Episode 1, Arla
มุมมอง 8172 ปีที่แล้ว
Auto-translate does not work in the TH-cam App. To translate our videos, watch them within our webpage or on a desktop computer. PompAbility is a series of short documentary films illustrating people living with Pompe Disease, a rare neuromuscular condition, . Episode 1 tells the story of 2-year old Arla, who was diagnosed with Infantile Pompe Disease in March 2020. The compelling and touching ...
IPA WORLD Interview Allan Muir
มุมมอง 1893 ปีที่แล้ว
Auto-translate does not work in the TH-cam App. To translate our videos, watch them within our webpage or on a desktop computer. Raymond Saich interviews Allan Muir about his experiences at the annual WORLD Symposium. Raymond is President of of the Australian Pompe Association. Allan is Vice-chair of IPA and Chair of the UK Pompe Support Network,
ZiP004 Part B: Nutrition and COVID-19
มุมมอง 824 ปีที่แล้ว
This is the second part of a presentation given to the Pompe Support Network by Dr Gisela Willcox. Dr Wilcox is a Consultant in Metabolic Medicine at The Mark Holland Metabolic Unit, Salford Royal Foundation NHS Trust, Manchester, UK
ZiP 004 Diet and Nutrition advice for Pompe Disease - Part A
มุมมอง 1844 ปีที่แล้ว
ZiP 004 Diet and Nutrition advice for Pompe Disease - Part A
ZiP 003: Patients Introduction to Respiratory Muscle Training for Late Onset Pompe Disease
มุมมอง 1014 ปีที่แล้ว
ZiP 003: Patients Introduction to Respiratory Muscle Training for Late Onset Pompe Disease
Amazing work!
I really enjoyed this film and I'm happy we have someone that understands us in the House of Lords. Wise words about acceptance. I face barriers daily in a wheelchair but I still go out on it everyday as I still want to get amongst it, as my nan used to say, and not just be an onlooker. Thank you xx
Thank you Jeff for advocating for public travel access in London. I live in Birmingham and we gave plenty of buses but they have lots of prams on, and also when it's busy, no one queues, they all surge onto the bus, which is intimidating when in a chair, especially when I've had people going through my shopping bags on the back of my chair. I got a WAV a few years ago that really helps, but I have to save to afford the several thousand pounds to adapt it and lower the floor to accommodate my chair which is high also. Thanks for sharing your story Julie G, from Birmingham xx
What a lovely film. Beautiful family ❤