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Winter Season - talks, presentations and events

January 2022

New talks and presentations uploaded each Monday in January!

We have a welcome video on our YouTube channel, GSDScreen, which features the new CEO of the charity, Val Buxton. As well as Val introducing herself to you all, she tells us about our Winter Season 2022. We had our first Winter Season at the beginning of 2021 which was in place of our face-to-face conference. Due to its great success, we are holding a season again over the month of January 2022. Videos will include presentations from medical professionals and patient stories. They will cover topics for Pompe, McArdle’s and Hepatic GSDs. We will also be uploading ‘Videos for all’ which will cover more general topics that you will hopefully find interesting and informative. Below are our videos under the four themes, listed in reverse date order. We will be adding every Monday.

Videos for All

31 January – Ultragenyx Pharmaceutical – Dr Zoe Farrington – Gene Therapy
24 January – Elizabeth Davenport – Specialist Care Advisor  
24 January
– Dr Maninder Ahluwalia – Gene Therapy
17 January
– Zanib Hussain – Welfare Benefits
10 January
 – Meet the AGSD-UK Volunteers
3 January
– Meet the AGSD-UK Staff Team
3 January
– Dr Maninder Ahluwalia – Eat to fit your genes
22 December
– Gemma Seyfang – Information about Winter Season Quizzes and the Pompe Sunday Social
22 December
– CEO Val Buxton – AGSD-UK Announcement

Hepatic GSD videos

24 January – Joanna Gribben and Gemma Hack – GSD at Evelina London Children’s Hospital
17 January – Matthew Arthur – GSD 3a Featherweight
10 January
Sarah King – GSD 1b – Life Pre and Post Empagliflozin
3 January
– Antonio Ochoa Ferraro – Sodium-glucose co-transporter 2 inhibitors in treating neutropenia in GSD1b
3 January – Ciara Harkins – GSD1a – University Life

Pompe videos

31 January Dr Charlotte Dawson & Antonio Ochoa Ferraro – New Treatments for Pompe Disease under EAMS
24 January
– Andrea Duckworth – Travelling with Pompe Disease
24 January
– Dr Jordi Diaz Manera – How can we assess muscle function in LOPD patients
17 January
– Olivia Osabutey Ayor – Samuela’s Diagnois
10 January – Gemma Seyfang – My Pompe Diagnosis Journey
3 January – Luke Fraser – JS Bach, Aria (Goldberg Variations)

McArdle’s videos

31 January – Joff Brown – An Introduction to Exercise in McArdle Disease
31 January – Andrew Wakelin – The Benefits of Walking Poles in McArdle’s
24 January – David Thompson – June 2022, Walking in Wiltshire
24 January – Wendy Newman – McArdle’s Phase1b trial & partnering with Patient Advocacy Organisations
17 January – Sioned Williams – Her passion for music, photography and poetry
17 January
– Professor Ros Quinlivan – Research for McArdle Disease
10 January
– Dr Stacey Reason – The Clinical Practice Guidelines for GSD5 and 7 are now published
10 January – Andrew Wakelin – Review of the McArdle’s year 2021
3 January
– Andrew Wakelin – IamGSD Training support webpage and resources
3 January – Andy Williams – The 12-Minute Walk Test
22 December – Andrew Wakelin – Introduction to the McArdle’s Theme

Live events – dates and times (GMT )

Our live events will be on Zoom. Here are the details of the themes, dates and times. Watch this space for details of any changes and additional events through January!

Welcome to events: Gemma Seyfang tells you more about the Quizzes and the Pompe Sunday Social.
Gemma’s quizzes and Pompe Sunday Social

Events for All

Saturday 8 January at 10 am – Adults’ Quiz open to anyone (aged 16 and over) affected by GSD, with Gemma Seyfang. Saturday 15 January 10 am – Children’s Quiz open to anyone affected by GSD with Gemma Seyfang, children 8 and over).Sunday 30 January 9.30 am – AGSD-UK AGM Please note: Only paid members are able to vote in the AGSD-UK AGM. If you would like to join and get involved or are already a member and would like the link to attend the AGM, please email info@agsd.org.uk

Please email seasonproducer@agsd.org.uk for the zoom link to any of the above events (quizzes and AGM).

McArdle’s events

Zoom Get-Togethers – Every Sunday in January, 11 am An email has been sent to all UK McArdle people with the Zoom links to the McArdle Get-Togethers. If you didn’t receive it please email the coordinator Andrew Wakelin at type5@agsd.org.uk Please join promptly at the start of the session as otherwise it messes up the introductions.
Sunday 2 January 11 am
– open to all.
Sunday 9 January 11 am – open to all.
Sunday 16 January 11 am – for McArdle children & their parents.
Sunday 23 January 11 am – open to all.
Sunday 30 January 11 am – open to all. Video welcome to the McArdle’s Zoom Get-Togethers

Pompe events

Sunday 16 January 1 pm – Pompe Sunday Social
Sunday 23 January 2 pm – Pompe Live Event with Jacose Bell from Spark. She will be presenting on the investigational gene therapy approaches for LOPD with an opportunity for a Q&A.

Please email seasonproducer@agsd.org.uk for the zoom link to any of the above Pompe events.

Hepatic events

Saturday 29 January 10am – Hepatic Coffee Morning

Please email seasonproducer@agsd.org.uk for the zoom link to this event.

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.