Digital Community Weekend 2021
Thank you to everyone who joined us for our Community Weekend!
The Alex TLC Digital Community Weekend brings together leukodystrophy sufferers and their families, alongside doctors, researchers and scientists from around the world to discuss how leukodystrophies affect them and to build long lasting and supportive relationships.
Impact Report
The Impact Report for our Digital Community Weekend 2021 is now available to view. Thank you to everyone who took the time to complete our Impact Survey. To view the report, please click on the link: Impact Report
Question & Answer Sessions
In the afternoon of each day we held Question and Answer sessions involving the professionals that presented on that day. We have produced a written summary of the questions and answers discussed during these sessions. We felt it was important to circulate this information as it contained valuable information for all within our community.
Please click on the link to view the PDF summary: Q&A Summary CW2021
Recorded Content from the Weekend
We recorded presentations at the weekend and the content is available on our YouTube channel. To access the playlist of the content, click on the link: https://www.youtube.com/playlist?list=PLjPDnG-7mcNUfqn9766y8UEX3VLxoD6Nr
Saturday 20th November
NB . Times & sessions subject to change
• Denotes Parallel Session
10:00 – Welcome and Alex TLC Update – Alex TLC
10.15 – NHS England Inherited White Matter Disorders Patient Registry – Dr John Livingstone
10.45 – Leriglitazone research update (Adrenoleukodystrophy and Adrenomyeloneuropathy) – Minoryx Therapeutics
11.15 – Break
11.30 – PXL770 and PXL065 for adrenomyeloneuropathy – AMN Research Update – Poxel
12.00 – Metachromatic Leukodystrophy MLD Update – Prof Nicole Wolf
12.30 – Lunch Break * meet & chat
13.00 – Alexander Disease Research Update
– Dr Amy Waldman and Katrina Moore PhD
13.40 – Natural History Study & Patient Reported Outcome Measures (Adrenomyeloneuropathy) – SwanBio
14.00 – Gene therapy update (GM1 gangliosidosis, & Krabbe) – PassageBio
14.15 – Break
14.30 – New Born Screening for Adrenoleukodystrophy Round Table Summary – Prof Colin Steward
15.00 – Professional and Patient Q&A Panel
15.45 – Mindfulness Session – Dr Pujit Gandhi
- Parallel Session: Alex TLC Children’s Book Workshop – Simon Chadwick
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Sunday 21st November
NB . Times & sessions subject to change
• Denotes Parallel Session
10.00 – Day 2 Welcome & Overview– Alex TLC
10.15 – Alex TLC Support Services – Karen Harrison & Suzanne Gosney
10.45 – Expectations of patient care and impact of new NHS England Inherited White Matter Disorder Service – Dr Rahul Singh
11.15 – Break
11.30 – Long term impacts of Bone Marrow Transplant – Claire Turner & Dr Rachel Cox
- Parallel Session: Support for Severely Symptomatic Patients (adults) – Professor Jeremy Chataway & Dr David Lynch
12.00 – Support for Severely Symptomatic Patients (children) – Dr Alasdair Parker
- Accessible Physical Wellbeing Activity – The Disability Foundation
12.30 – Lunch Break * meet & chat
13.00 – Genetic counselling and informing wider family – Jon Wells
13.35- Bone Marrow Transplants and Gene Therapies. – Orchard: Katie Snell
- Parallel Session: Managing Continence Symptoms – Dr Sarah Wright
14.10 – Transition to adult services – Cambridge Rare Disease Network
- Parallel Session: Children’s Art Activity – ARTBASE
14.45 – Break
15.00 – Managing Mental Health – Dr Pujit Gandhi
15.30 – Professional and Patient Q&A Panel
16.00 – Ways to get involved with our work & raffle draw get tickets here – Alex TLC
16.30 – Britain’s Got Talent – Steve Royle
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Thank you to our sponsors
FAQ’s
Will the presentations be available to watch after the event?
Presentations will be available for all those who purchased a ticket for the event. We also understand that some may not be able to attend both days so we will contact ticket holders via email and give you the links to view or revisit a presentation to watch in your own time.
Using Zoom, what do I need to know?
If you are worried then please contact info@alextlc.org and we will be able to help you access the weekend.
Can I ask questions?
During the presentations you will be able to forward your questions, which will then be put forward to the doctors and professionals during our Live Q&A session. Any questions you have that are not answered during the Live Q&A we will make sure we get them answered after the event
Will I be able to chat to others?
Our community weekends are a great way to see new friends and make new ones. During the lunch breaks there will be an opportunity to see and chat with others.
Why is there a fee this year?
For the first time, we are charging a small fee for those attending our digital community weekend. This fee is to cover the costs of running the event. Like many small charities we have seen a significant fall in income from reduced fundraising activities and voluntary donations. It’s been a difficult decision and one we hope you understand.
We want to make this event as accessible as possible to all our beneficiaries, so please get in touch by emailing info@alextlc.org if the ticket fee is preventing you from being able to attend.
Why should I attend this event?
The weekend is the only event of it’s kind in the UK and so therefore is a great opportunity to hear about leukodystrophy related research and clinical trials. You will have the chance to watch presentations from specialists about specific areas of condition management. Also, join us for wellbeing sessions, entertainment and opportunities to meet other families.
Why is it over two days?
To ensure that we can provide a varied agenda whilst also ensuring that the days aren’t too long.
If you have any questions which aren’t listed please don’t hesitate to contact us info@alextlc.org
Please keep an eye out on our social and communication channels for updates.