Join us for our annual conference!
The focus of our conference this year is upon fragile X premutation carriers. Approximately 1 in 250 women and 1 in 800 men have small changes to their "fragile X gene", which do not cause Fragile X Syndrome but mean that people may pass on the condition to future generations. Until quite recently, it was thought that the premutation had little effects for the individuals themselves, however, we are now learning more about the possible effects for carriers. We know from our members that this is a key issue, which is why it will be the focus of this year's conference.
We are delighted that the following speakers will be joining us and sharing their expertise at this conference:
Dr Angela Barnicoat (Consultant in Clinical Genetics, Great Ormond Street. Fragile X Society Specialist Advisor): Fragile X inheritance and reproductive choices for carriers.
Dr Jo Moss (Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham): Presenting the Cerebra Centre's latest research findings on female Fragile X Carriers
Dr Iris Trender-Gerhard (Consultant neurologist, St Mary's Hospital. Clinical Research Fellow, University of Manchester): Fragile X- Associated Tremor/Ataxia Syndrome: overview and introduction to new clinic at St Mary's Hospital.
Mark Smith: family story on living with Fragile X and planning a family.
After the great success of our #fragileXtraordinary session at our Scotland conference earlier in the year, we will also be hosting a session to celebrate the acheivements of members of our community, and of the Fragile X Society.
In addition to all of the fantastic speakers above, we will have researchers presenting their latest research via posters at the event. We are also delighted to be hosting an art installation called the "Peter Project", created by Lesley about her brother Peter's (71) life. This installation has been touring the country, raising awareness of Fragile X, and we are very excited to host it and share with you!
We will also be hosting a parallel room for adults with Fragile X or young people who are too old for the creche, but not keen to attend the talks. We will have a relaxed room with films and relaxed activities. Please contact firstname.lastname@example.org for more information.
As every year, we will also be hosting a raffle, there will be a stall to purchase merchandise and some gorgeous handmade bags and artworks donated to the Fragile X Society by members. We will also be hosting our AGM where you can learn about what has been happening at the Fragile X Society and members can vote upon issues relating to the Society.
Registration includes refreshments and a hot lunch, and a creche is also available for young people.
Parking is available on site but requires pre-booking. Full details here, along with directions, travel and accommodation information: http://www.conferenceaston.co.uk/attending-an-event/
9.00am Registration and coffee. Crèche opens.
9.30am Fragile X Society AGM (see separate agenda)
10.00am Introduction and overview of Fragile X. Becky Hardiman (CEO)
10.15am Fragile X inheritance, and reproductive choices for carriers. Dr Angela Barnicoat (Consultant Clinical Geneticist)
11.15am Family story. Fragile X and Family Planning. Mark Smith.
11.45am Comfort break
12.00am Features Associated with being a Female Fragile X Carrier. Results of recent research. Jo Moss (Researcher, Cerebra Centre for Neurodevelopmental Disorders)
12.45pm Lunch. Note: Crèche closed.
2.00pm Fragile X-Associated Tremor/Ataxia Syndrome: Overview and introduction to new clinic at St Mary's Hospital Manchester. Dr Iris Trender-Gerhard (Consultant Neurologist)
2.30pm Q&A with speakers (Dr Angela Barnicoat, Dr Jo Moss, Dr Iris Trender-Gerhard)
3.00pm Research Poster Session (tea and coffee available)
- An opporunity to learn about the latest findings, and to speak to the researchers, over a cup of tea or coffee.
- Further opportunity to view Peter Project Art exhibition and to browse our stalls.
3.40pm #fragileXtraordinary Presentation: A celebration of our members' achievements of the year.
4.00pm Conference and Crèche close.
4.15pm Optional #fragileXpedition conga line!