Winter Season - talks, presentations and events

Talks and Presentations

Available now (by release date):
• 1 Mar – GSD2 Pompe – Ella Windle – The Importance of Training New Medics in Pompe disease
• 22 Feb – Hepatic GSDs – Dr Ulrike Steuerwald – Do’s and dont’s in ketotic GSDs
• 22 Feb – GSDs – Chef Neil – Meatloaf
• 22 Feb – GSDs – Chef Neil – Breakfast Smoothie
• 22 Feb – Muscle GSDs – Andrew Wakelin – Lucky Dip of Memorable Moments Part 2
• 22 Feb – Muscle GSDs – Andrew Wakelin – Example of Adapt and Adjust
• 15 Feb – GSD 2 Pompe – Dr Yin-Hsiu Chien – Newborn screening: Taiwanese Experience (Baebies)
• 15 Feb – GSDs – Chef Neil – Biscuits
• 15 Feb – GSDs – Chef Neil – Eggcellent Muffins
• 15 Feb – Muscle GSDs – Andrew Wakelin – Facebook groups for muscle GSDs
• 8 Feb – GSD 2 Pompe – Dr Jon Rajan – Pompe disease: A pain medicine perspective
• 8 Feb – GSDs – Chef Neil – Brownie
• 8 Feb – GSDs – Chef Neil – Bread Rolls
• 8 Feb – Muscle GSDs – Carrie Connors – Lessons from an episode of rhabdomyolysis
• 1 Feb – GSD 2 Pompe – Dr Stephanie Austin – Overview of Pompe Disease
• 1 Feb – GSD 9 – Rebecca Gibson (MD/PhD Student) – Deep phenotyping of Liver GSD IX
• 1 Feb – Muscle GSDs – Andy Williams – 12 minute walk test for diagnosing McArdle’s
• 1 Feb – GSDs – Chef Neil – Marinara Sauce
• 1 Feb – GSDs – Chef Neil – Cauliflower Crust Pizza
• 25 Jan – GSD 3 Cori – Dr Priya Kishnani – Update on Cori Disease
• 25 Jan – Muscle GSDs – Andrew Wakelin – Lucky Dip of Memorable Moments
• 18 Jan – GSD 2 Pompe – Dr Krishanu Saha – Correcting GAA mutations with CRISPR: prospects for gene therapy
• 18 Jan – GSD5 McArdle – Ian Macdougall – Improving fitness after retirement
• 11 Jan – GSD 2 Pompe – Dr Gisela Wilcox – Diet and Nutrition in Pompe Disease
• 11 Jan – Muscle GSDs – Andrew Wakelin – When is McArdle’s not McArdle’s?
• 4 Jan – Muscle GSDs – Dr Stacey Reason – IamGSD and International developments
• 28 Dec – Muscle GSDs – Andrew Wakelin – Celebrating 10 years of the “Walking with McArdle’s” course
• 28 Dec – Muscle GSDs –Stacey Reason – Desk Cycle for McArdle’s Second-Wind
• 21 Dec – GSD 1b – Dr Terry Derks – A Podcast on GSD, Symptoms, Treatments and What Daily Life Looks Like with the Disease (Ft. Enrique Landelino Contreras – The Father of Nina who has GSD 1b)
• 21 Dec – GSD 1b – Kathryn Pierce – Treating Neutropenia in GSD1b using Empagliflozin
• 21 Dec – Muscle GSDs – Andrew Wakelin – Explaining McArdle’s to friends
• 14 Dec – GSD 2 Pompe – Jordi Diaz-Manera – MRI for the Diagnosis of Pompe
• 14 Dec – Gemma Seyfang – Children’s Quiz Taster (Available to all Children affected by GSD)
• 7 Dec – GSD 2 Pompe – Sarah Steed and Helen Gallagher – Your Clinical Nurse Specialist
• 7 Dec – Muscle GSDs – Andrew Wakelin – McArdle’s activities in 2020
• 7 Dec – Nick Jones – Introduction to our Winter Season

We hope you enjoyed the Winter Season 2020/21!! All videos will be kept on YouTube for you to watch at your leisure. Thank you for continuing to support AGSD-UK

Patient Stories

See below our list of personal stories from GSD patients, with more being added each week.

Go to our Patient Stories playlist.

Available now (by release date):
• 22 Feb – GSD5 McArdle’s – Stacey Reason – My shoelace must be undone… again
• 15 Feb – GSD5 McArdle’s – Andy Williams – A personalised diet and exercise regime
• 8 Feb – GSD5  – Sonia Worthy – Walking during the pandemic
• 1 Feb – GSD5 – Lucy Smith – From McArdle’s diagnosis at 5 to secondary school at 11
• 25 Jan – GSD 2 Pompe – John Foxwell – Continence issues and promoting the ‘Toilet Card’
• 25 Jan – GSD5 – Bronte Thomas – Challenges of Starting University
• 18 Jan – GSD5 – Michael Wilson – Building aerobic fitness during Covid-19
• 11 Jan – GSD 3b – Florence Osborne– GSD, Family Life and 2020
• 4 Jan – GSD 3a– Georgina Chalkley – My Experience in 2020 with GSD
• 4 Jan – GSD5 – Andrew Wakelin – Talking about the benefit of aerobic fitness
• 28 Dec – GSD 2 Pompe – John Foxwell – My BiPap story
• 21 Dec – GSD 1b – Lisa Massimo – GSD, Genetic Counselling and Me
• 21 Dec – GSD 3a – Music by Matt Arthur – Santa Claus is Coming to Town
• 14 Dec – GSD5 McArdle’s – Sioned Hosseinian – My year with McArdle’s, plus some seasonal harp music
• 7 Dec – GSD 3a – Esther Prosser – Esther’s Christmas Message
• 7 Dec – Introduction to the Patient Stories in our Winter Season

We hope you enjoyed the Winter Season 2020/21!! All videos will be kept on YouTube for you to watch at your leisure. Thank you for continuing to support AGSD-UK