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Saturday, 1 June 2019 9:30 AM - 5:30 PM GST
138, Digbeth, Birmingham, England, B5 6DR, United Kingdom
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For 0 - 16 year olds
BVSC, The Centre for Voluntary Action, 138, Birmingham, England, B5 6DR, 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 19 May
If you will need a carer to accompany you, contact us at conference@aniridia.org.uk.
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.
We provide a creche for children under 12.
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
All attendees, speakers, sponsors and volunteers expected to adhere to our code of conduct to create a safe environment for everybody.
Information gathered as part of this event will be managed according to our privacy and data protection policy.
When discussing this event online, please mention Aniridia Network and use:
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.
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.
Simon is a reader in the Department of Education and admissions tutor for the MA Education. He is also a centre research associate in the Centre for the Philosophy of Natural and Social Science, London School of Economics. Simon’s current work focuses on inclusion, technology, museums and the arts for people with sensory impairments. He is currently involved in an international project investigating the use of mobile technologies as tools of inclusion for disabled people in museum environments.
Eleanor attended St Mary’s School for the Blind, in Dublin. She trained at the Royal National Institute of the Blind (RNIB), School of Physiotherapy and then worked in that profession at University College Hospital, London. She had a particular interest in the treatment of adults and children with neurological conditions including cerebral palsy.
Miriam was Born with Familiar Aniridia, attended mainstream school, in her early years, then on to University, trained in mental health, and to be a Social Worker. Her work included working with disadvantaged children. Losing her sight rapidly and eventually completely she embarked on a career in Customer Service. At the same time, Miriam was a disability officer, Equalities and health & safety Rep, fighting for the rights of those with disabilities and other challenges in the work place.
Dr Ngozi Margaret Oluonye is a Consultant in Paediatric Neurodisability with expertise in the management of children with complex neurodevelopmental conditions including, Autism, ADHD, Developmental and Intellectual disability with specialisms in functional visual impairment.
I was born with aniridia and nystagmus, and went to a special school for the visually impaired. Since graduating from university, I have had a long career working for a local authority printing department. 2½ years ago I moved to London, and have been exploring many of the delights the city has to offer. I'm also a blogger, and regularly publish posts and videos about my experiences.
Clive is a special education needs advisor and advocate. He has drawn experience whilst specialising in visual impairment within hospital based child development centres, an independent residential special school, an independent residential special Further Education college, a local authority peripatetic visual impairment team and national charities supporting children, young people and their families. Clive is a qualified teacher and social worker. His hobbies include cooking and motorbikes.
Guide Dogs
Calibre Audio Library
Delegates register, get a name badge and information pack the can help themselves to tea or coffee.
Opening proceedings for Conference 2019, announcements and safety information.
Dr Ngozi Oluonye aims to give an overview of the management of the child with visual impairment, what to expect in the early days, the knowledge gained over the past decade about the impact of visual impairment on the overall development of the child, information about support available within the early years and finally an update on current and proposed research into Aniridia
Consultant Paediatrician Great, Ormond Street Hospital
A chance for delegates to talk to parents and patients about their experiences of dealing with aniridia and or WAGR syndrome
The AGM is a formal meeting of the Aniridia Network members. It is the official part of our Conference. The trustees will present a report on the work that has been carried out over the previous year. This includes the financial records of ANUK, fundraising and other activities. The trustees are volunteers responsible for controlling the management and administration of the charity. They are appointed by members in an election at the AGM. We need more help so find out about joining the trustee team. As well as the formal business of the AGM, there is also the opportunity to ask the trustees questions and put forward suggestions for future activities and fundraising.
Aniridia Network Trustees
Miriam shares her personal achievements whilst living with Anirida and other health conditions.
Member Aniridia Network
Insights in to working and living with aniridia - life experiences
Communications Officer Aniridia Network
A chance for members to share with each other their experiences of living with aniridia and or WAGR Syndrome.
An opportunity for for patients of aniridia to discuss topics of their choice.
Advocating for the needs to children with sight loss in education
Special Educational Needs advisor
An opportunity for people with aniridia to talk as a group about topics of their choice, led by an Aniridia Network official.
Dr Simon Hayhoe will share is experience of helping build a more inclusive society by looking at case studies for education and work place. the empowerment of disabled people to make there own inclusion possible and looking at skills and accessible technologies.
PHD FBCS FHEA (Reader) Bath University
Eleanor share her life of living with aniridia her achievements including experience at school, moving to London, access to work and a career in physiotherapy.
Trustee Aniridia Network
Conclusion of event, Thanks etc..
Join us for the conference after-party in the bar of the nearby family-friendly Radisson Blu 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. https://www.radissonblu.com/en/hotel-birmingham
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