Aniridia Network Conference 2023

Saturday, 2 September 2023 10:00 AM - 5:00 PM BST

Centenary Square , Broad Street, Birmingham , Birmingham, B1 2EA, United Kingdom

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1. Select Seats

2. Review and Proceed

Saturday, 2 September 2023 10:00 AM - 5:00 PM BST

Library of Birmingham, Centenary Square , Birmingham , Birmingham, B1 2EA, United Kingdom.

This is a day especially for people interested in and affected by aniridia.

 

Come to hear from experts in medicine, education and life with aniridia. Meet new people who are in the same situation as you or have been there previously.

Deadline to buy tickets is 11.45pm on Sunday 20 August

If you will need a carer to accompany you, contact us at conference@aniridia.org.uk.


How to get there

Written and photographic instructions for how to walk from Birmingham New Street Station to the venue.

If you need a sighted guide from a transport hub, contact us to make arrangements.

Creche

We provide a creche for children under 12.

Social evening

Join us for the conference after-party at a family-friendly nearby hotel bar. Make new friends, relax and buy your own drinks and food. We can later help you get back to the station whenever you are ready to leave

Event code of conduct

All attendees, speakers, sponsors and volunteers expected to adhere to our code of conduct to create a safe environment for everybody.

Your data

Information gathered as part of this event will be managed according to our privacy and data protection policy.

Social media

When discussing this event online, please mention Aniridia Network and use: #ANUKconf

Aniridia Network

Aniridia Network is a support group and charity for people affected by aniridia: those who have it plus their family, carers, doctors, educators and other support givers.We want all these people to be hopeful, confident, supported and well informed regarding aniridia.

Contact the Organizer

Alyson Mountjoy
Author/Chair
APD Support UK

Alyson’s adult son has APD and other conditions. She founded and chairs APD Support UK, providing information and support groups for those affected by APD. She has also written two books on APD and has contributed to various professional research projects, SEN charity blogs, and other related publications.

https://apdsupportuk.yolasite.com/

About Alyson Mountjoy

Author/Chair
APD Support UK
Perm Bhachu
Information, Advice & Guidance Coordinator
Focus Birmingham

I assist people with benefit enquires and deliver sight loss courses.

https://www.focusbirmingham.org.uk/

About Perm Bhachu

Information, Advice & Guidance Coordinator
Focus Birmingham
Emily Nash
Member
Aniridia Network

I'm a physiotherapist and have two children who both have aniridia. I was registered severely sight impaired in 2016 and have glaucoma that is controlled with medication. I have had surgery for cataracts and a stem cell transplant on my cornea.

About Emily Nash

Member
Aniridia Network
Dulce de Lima Cunha
Postdoctoral Researcher
UCL Institute of Ophthalmology, UK / Radboud University, Netherlands

I started researching aniridia when I joined Mariya Moosajee's lab at UCL Institute of Ophthalmology, where we established stem cell models from aniridia patients to test for new therapies. I have since moved to the Netherlands (Radboud University) where I continue to work with these cells but now from a basic research angle, where I try to understand how PAX6 works and the mechanisms leading to disease.

https://www.researchgate.net/profile/Dulce-Lima-Cunha

About Dulce de Lima Cunha

Postdoctoral Researcher
UCL Institute of Ophthalmology, UK / Radboud University, Netherlands
Abbie & Bernie Reddington
Members
Aniridia Network

Norwich born and bred mother and daughter. Bernie is a mum of 3 amazing grown up children. I work as a Regional Campaigns Officer for RNIB, working to break down barriers that stop blind and partially sighted people leading independent and fulfilling lives. I am totally blind, having lost my residual vision in 1994, as a result of complications of Aniridia. My son was just 11 months old and I quickly had to find different ways of navigating my way through parenthood. Parenting without sight is a tough gig, but something I’m proud to say I’ve done. I also live with Auditory Processing Disorder, which in combination with my sight loss, makes life extremely interesting! 2 of my 3 children have Aniridia And APD too. I really enjoy travelling, visiting my family in Cardiff, Plymouth and York, local history, reading, making people laugh, and making weird concoctions in the kitchen! I love walking in the Norfolk countryside, especially by the river and listening to nature!

About Abbie & Bernie Reddington

Members
Aniridia Network
Veronica van Heyningen
Patron
Aniridia Network

Led the group that helped to identify (1991) PAX6 as the gene mutated in Aniridia and went on to explore the effects of mutation on the eye and other regions of the body. Studied how PAX6 functions, together with other eye development genes.

https://iris.ucl.ac.uk/iris/browse/profile?upi=VVANH41

About Veronica van Heyningen

Patron
Aniridia Network
Tony Moore
Patron
Aniridia Network

Tony Moore is a clinical scientist with an interest in inherited eye disease. He was appointed to the Duke -Elder Chair of Ophthalmology at University College London in 2001 and moved an endowed chair in Ophthalmology atUniversity fo California San Francisco in 2014

About Tony Moore

Patron
Aniridia Network
Katie, James, Andy .
Trustees
Aniridia Network

We are volunteers elected by the members of Aniridia Network each year at its annual general meeting. Together we form the Trustee Board which is responsible for running Aniridia Network, making decisions about what the charity does in line with its governing document. Each trustee is also responsible for a set of activities and any volunteers involved with doing them.

https://aniridia.org.uk/trustees/

About Katie, James, Andy .

Trustees
Aniridia Network
Emily Stirling
MSc Student in Genetic and Genomic Counselling
Cardiff University Centre for Medical Education

I recently finished my MSc in Genetic and Genomic Counselling at Cardiff University. During my final year I was very lucky to work with Aniridia Network to recruit participants for my dissertation project. I have previously worked in a busy ophthalmology department as an imaging technician and have been working as a genomic associate in the north west over the past year.

https://aniridia.org.uk/2022/10/12/internet-social-media-research/

About Emily Stirling

MSc Student in Genetic and Genomic Counselling
Cardiff University Centre for Medical Education
Helen Campbell
MSc Student in Genetic Counselling
Cardiff University Centre for Medical Education

Prior to deciding to be a genetic counsellor, Helen worked in the charity sector for eight years, specialising in impact measurement and project evaluation. She holds a BA in natural sciences.

About Helen Campbell

MSc Student in Genetic Counselling
Cardiff University Centre for Medical Education
Vivienne Kit
Ophthalmology Registrar
NHS

Vivienne is a current ophthalmology trainee in North London, with a research interest in aniridia. She is currently working towards a MD(Res) supervised by Professor Mariya Moosajee.

https://www.researchgate.net/scientific-contributions/Vivienne-Kit-2196133401

About Vivienne Kit

Ophthalmology Registrar
NHS