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Winter Season - talks, presentations and events

December 2020 to February 2021

Our Winter Season has finished, but the videos remain available. We will soon conduct a survey to help shape this year’s events, or you can give us feedback via our Contact form.

New talks and presentations uploaded during each Monday!

We are offering a series of ⇒ talks and presentations over the next few months. There will be medical and research updates, news of our activities, and more. Plus a series of ⇒ patient stories.

These are recorded so you can watch them at a time that suits you. Come back after each Monday to see what is new. They will remain available for an extended period, so there is no hurry.

We are also offering ⇒ live events for you to join in – some quizzes, a coffee morning and of course our Annual General Meeting for the official business. And watch out for ⇒ other things to explore.

If you have more ideas please let us know. We are working hard to ensure we provide you with the updates that would usually have happened at our face-to-face conference.

Talks and Presentations

See details right here of our talks and presentations. More will be added each Monday. We will be adding advance details as speakers commit. The videos are on our YouTube channel, GSDScreen.

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.

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

Live events

Our live events will be on Zoom. We will give you plenty of notice once we fix themes, dates and times. Watch this space for the calendar of events over the winter!

Dates of planned events (times in GMT):

• Sat 16 Jan – Two Quizzes for all children affected by GSD
Gemma Seyfang will host the quizzes: Children up to age 10 at 11am; and Children age 11 to 16 at 2pm

• Sun 17 Jan, 11am to 12 noon – Pompe Support Team Coffee Morning
Gemma and the Pompe Team members would love to see you: chat, catch up and chew over anything you like. All our Pompe members are welcome. Email jane.lewthwaite@agsd.org.uk to register and receive the Zoom link the day before.

• Sun 24 Jan – 9.30am – AGSD-UK Annual General Meeting
To join email jane.lewthwaite@agsd.org.uk

• Sun 31 Jan – 11am-12pm – McArdle’s Coffee Morning
Join us online for an informal chat over a mug of coffee and biscuits (bring your own!). Hosted by our coordinator, Andrew Wakelin. It’s really about having a chat and getting to know each other. A one hour session on a Sunday morning, so pyjamas allowed! Email type5@agsd.org.uk to register and receive the Zoom link the day before.

• Sun 28 Feb – 11am-12pm – McArdle’s Coffee Morning
Another chance for an informal chat online and get to know each other, as above. Email type5@agsd.org.uk to register and receive the Zoom link the day before.

Tune-in Tuesday!

Gemma from AGSD-UK is starting ‘Tune-in Tuesday!’

If you are feeling stuck at home, want some company or just fancy a chat then come and join Gemma for a social call at 11.30am on the follwing dates:

January 26th
February 2nd
February 9th

Anyone and everyone welcome. Please email info@agsd.org.uk for the zoom link

Other things to explore!

GSD2 Pompe – Luke Fraser’s Podcast
Here is a link to Luke Fraser’s podcast of his monthly radio show, The Tonic, featuring a global mix of electronic and instrumental classical music from the 20th Century up until now

The podcast archive is available under the listen menu –
 Go to Home – The Tonic

The information we provide through our Winter Season can be only of a general nature. No part of the information may be used as a substitute for obtaining personalised medical advice.

Many thanks to our Winter Season sponsors.