Fragile X Society Conference

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Date and Time

Location

Location

Medical School

Birmingham

B15 2TH

United Kingdom

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Refund Policy

Refund Policy

Refunds up to 7 days before event

Sales Have Ended

Ticket sales have ended
Please note lunch orders have closed and you are advised to bring your own food to the conference as there is no food outlet on campus.
Event description

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We are pleased to announce our 2019 Fragile X Conference! We are delighted to be welcoming some wonderful speakers to present the latest information and research about key aspects of Fragile X, guided by the topics which we are asked about on our helpline.

This event will be in a more traditional lecture-style format, in contrast to our family day and weekend events.




Agenda and Speakers

All talks in Leonard Deacon Lecture Theatre, Wolfson Centre for Medical Education

9.30am: Arrival & refreshments

10.00am: Adulthood and Fragile X Syndrome. (Dr Andrew Stanfield)

  • Dr Andrew Stanfield is a Senior Clinical Research Fellow at the Patrick Wild Centre for Research into Autism, Fragile X Syndrome and Intellectual Disabilities at the University of Edinburgh. He is also an Honorary Consultant in the Psychiatry of Learning Disabilities in Edinburgh.

11.00am: Gene Editing and Fragile X - the status of research and what the future might hold. (Dr Mark Hirst)

  • ‘Fixing’ genes using editing has been getting lots of press, for both good and bad reasons. But as a potential alternative to a drug-based route to reboot fragile X brain cells, just how feasible might editing the fragile X gene be? Dr Hirst's talk will aim to explain what is meant by gene editing and what it might mean for fragile X. Along the way he’ll take a look at some of the hurdles that have still to be overcome but also look at where major progress in other genetic therapies has been made.

  • Dr Mark Hirst completed his PhD in the laboratory of David Porteous at the MRC Human Genetics Unit in Edinburgh in 1988 and from there moved to Oxford to work in the laboratory of Kay Davies within the institute of Molecular Medicine at the John Radcliffe Hospital. During this period he spent time working as a visiting PI in the laboratory of Charles Laird (FHCRC, Seattle, USA) and as a visiting researcher in the laboratory of Alan Wolffe (NIH, Bethesda, USA). Dr Hirst moved to the Open University in 1999 and became a fellow of the Royal Society of Biology in 2017.

12.00pm: Personal Fragile X Stories (Video)

12.15pm: Lunch in Wolfson Centre Cafeteria (See FAQs for details)

1.15pm: AGM and celebration of the Fragile X Society’s Year. Dr Kirsten Johnson (Chair, Fragile X Society)*

1.45pm: Fragile X Tremor/Ataxia Syndrome (FXTAS): overview of the condition and introduction to the clinic. Dr Sundus Alusi (Walton Centre)

  • Dr Sundus Alusi is a consultant neurologist with a special interest in movement disorders at the Walton Centre Foundation Trust, Liverpool. Her MD thesis was dedicated to the study of Tremor in Multiple Sclerosis and ended in a MD degree at Imperial College, London in 2001. She obtained the certificate of specialist training (CCST) in neurology in 2004. As a consultant, Dr Alusi’s work involves the diagnosis and management of patients with various neurological conditions and in particular movement disorders. This includes Parkinson’s disease and related disorders, such as tremor, dystonia and ataxia.

2.45pm: Research Posters & refreshments. Wolfson Centre Ground Floor Exhibition Area

  • Opportunity to learn about some of the latest research into Fragile X taking place across the UK, over a cup of tea! Also a great opportunity to network with others at the conference.

3.30pm: Update on the latest Fragile X Research from the University of Birmingham (Dr Kate Woodcock)

  • Dr Kate Woodcock is a senior lecture at the University of Birmingham, School of Psychology. Dr Kate Woodcock’s research interests can be summarised as aiming to investigate and explain human behaviour by considering a variety of influences including genes and environment. Kate is extremely interested in ultimately being able to bring about a behavioural change when such a change is desired by the individual in question.

4.00pm: Update on the latest Fragile X Research from the Aston University (Dr Jane Waite)

  • Dr Jane Waite is a Lecturer in Psychology at Aston University, and has previously worked as a researcher at Cerebra Centre for Neurodevelopmental Disorders as a research fellow and clinical psychologist. Her research focuses on understanding the development of mental health difficulties, and improving the identification of these difficulties, in people with intellectual disabilities and neurodevelopmental conditions. Jane’s research team are developing clinical assessment tools and interventions for minimally verbal individuals with intellectual disability and minimally verbal autistic children and adults.

4.30pm: Event close

Note: agenda may be subject to minor changes.

* the AGM may be attended by any member of the Fragile X Society without the requirement to pay for a ticket to attend the whole event.



Further Information and Frequently Asked Questions

How to get there.

  • Car: University of Birmingham’s Medical School is easily accessible by car (post code: B15 2TH). There is plenty of free parking available at the venue: both immediately outside the medical school and in the Vincent Road Car Park, which is just over the road.
  • Train: The Medical School is a very short walk (less than 200m) from University train station. University train station is easily accessible from Birmingham New Street station (one of the city's main train stations): trains take approximately 7 minutes and leave around every 10 minutes.

Information for arrival. Upon arrival, enter the medical school by the main entrance, which is up a small flight of steps. Once in the building, you will be welcomed by one of the Fragile X Society team who will direct you to the Wolfson Centre where you will be able to register and get refreshments. There is an alternative accessible entrance for those who require: please let us know if you need to use this and we will provide more details.


Lunch: Packed lunches are available to purchase in advance for £5 (you can do this as part of your ticket purchase). These lunches include: a pre-packed sandwich, packet of ready salted flavour crisps, bottle of still water, individually wrapped cake and an apple. You can select from five sandwich options, one of which is vegan. In addition, please do let us know about any dietary requirements at registration, so that they can be catered for. Alternatively, you may bring your own lunch. Of note, there are no places from which to easily purchase lunch on the day. Therefore, please remember to either pre-order lunch or bring some with you.


Is the event child friendly? Whilst children are welcome at the event (there is a cheaper young person's ticket available), the format of the day is seated lecture-style talks, and therefore may not be very entertaining for children. There is no childcare available at the event. If a quiet space is required during the day, there will be some quiet, empty spaces available on the day. For those looking for alternate activities for children during the day, this article provides some helpful information: https://www.birminghammail.co.uk/whats-on/whats-on-news/most-accessible-places-visit-day-14806317
Our Family Day and Weekend Events are aimed to be accessible for all members of the family including children. Keep an eye in our newsletter, website and social media for announcements about these events.


Ticket pricing. In order to support the cost of running the event, we have applied a small fee for attendance. However, we do not ever wish for the prices of tickets to be a barrier for people to be able to attend. Therefore, we have a number of free tickets available to those who may require them (limited to people with Fragile X or those with a family link to the condition), available on a discretionary basis. If you are able to do so, you may also provide an additional donation as you register to support others to be able to attend the event and to help us run more events in the future.


Will the talks be recorded? Yes, the talks will be recorded and made publicly available on our website after the event.

Photography around the event. We will be taking some photographs around the event in order to help communicate about our work with our supporters and the public. If you would like to not be included in these photographs, please indicate when registering.


Refund and cancellation policy. Please let us know as soon as possible if you are unable to attend the event, in order to help us with our planning and also to allow us to give your space to somebody else. We are able to refund your booking up to 7 days prior to the event.


Do I need to bring printed tickets? No. Although Eventbrite will generate and email you a ticket, you do not need to bring this to the event.

Where can I stay? For those requiring an overnight stay, there is accommodation available at the University: https://conferences.bham.ac.uk/accommodation/

Alternatively, there are many options in the centre of town. These hotels are half a mile or less from New Street Train Station (from which the Medical School is easily accessible via University station):

These examples are not endorsing any particular hotel, just giving examples of some of the options available. We do not have arrangements with any particular hotel for the event.

If you need any further information at all, then please do not hesitate to contact us: 01371 875100 or info@fragilex.org.uk

Looking forward to seeing you there!

The Fragile X Society Team

Date and Time

Location

Medical School

Birmingham

B15 2TH

United Kingdom

View Map

Refund Policy

Refunds up to 7 days before event

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