Ou r main event of the year took place online today. People from all arond the UK, Ireland and beyond joined via Zoom to hear and talk about various aspects of aniridia. There reactions were heartening:
I’m very grateful for all the effort that goes into putting these conferences together. It’s so helpful to listen to these speakers and interact with other members. It made me feel a part of a community. The practical advice from the speakers was the most helpful.
The event had a relaxed and informal feel and lots of useful information was given and gave an opportunity to ask questions of professionals. It enables one to be updated about medical progress and to learn from the experience of others.
Benefits of a low vision assessment for children and adults with aniridia
Dr Hannah Dunbar, Specialist Low Vision Optometrist, Moorfields Eye Hospital NHS Foundation Trust
A specialist low vision optometrist at Moorfields Eye Hospital and Senior Research Fellow at the UCL Institute of Ophthalmology. She has a PhD in low vision rehabilitation and has many years of experience seeing children and adults with visual impairment caused by genetic eye disease in the low vision service, and in multidisciplinary genetics and neuro disability clinics.
What happens when children and adults with aniridia attend a low vision assessment? Tips on getting the best from an appointment at a low vision clinic and advice on how to get referred to one.
This was the most positively received session:
Hannah was outstanding. She presented a lot of useful information in a clear and concise fashion. Separating child needs and adult needs was a really great idea.
Aniridia Network Annual General Meeting (AGM)
Trustees: Katie Atkinson, James Buller, Andy Baghurst
A summary of the charity’s annual report 2021/22, volunteer awards 2022 and (re-)appointment of Andy as trustee. Read the full AGM agenda.
What do you need? How can Aniridia Network help?
We asked what you think our charity should focus on to help you most. We split into groups, each led by a trustee to gather your views and ideas. The responses will inform out plans to support:
- Adults with aniridia
- Parents and relatives of a child with aniridia
- Professionals, donors. volunteers and others
Cornea Stem Cells Failure: Prevention and Current Therapies
Dr Samer Hamada, Consultant Ophthalmic Surgeon and Clinical Lead Queen Victoria Hospital. Twitter @EyeClinicLondon
A highly trained and experienced consultant ophthalmologist and cornea surgeon with a special interest in cornea, cataract and laser and lens refractive surgeries in adults and children. He has over 23 years of experience in ophthalmology. Areas of expertise include:
- non-laser intraocular lens refractive surgery
- advanced cataract surgery
- intraocular lens procedures including premium lenses (multifocal, toric, or phakic lenses).
A pioneer in managing corneal diseases in children, he is one of the very few eye surgeons in the world who have educational, academic and clinical skills to manage corneal diseases in children.
What you can do as a parent or patient with aniridia to protect ocular surface and prevent or delay the progression of stem cell failure?
Updates on conservative treatment and surgical management with a focus on mouth to stem cell transplantation.
Sadly this session was unexpectly short. Dr Hamada recorded answered to some questions later. Recordings will be available soon.
The importance of what he was saying about the health of the stem cells and monitoring eye lubrication cannot be overstated. We know from first hand experience that this is not stressed enough as something with huge consequences. His message and slides were hugely valuable
A qualitative study exploring attitudes towards the use of the Internet and social media in adults living with aniridia
Emily Sterling, Student at Cardiff University
Emily is an MSc Student in Genetic and Genomic Counselling at Cardiff University. She has a special interest in ophthalmic genetic conditions and how these affect the lives of individuals, having worked in an ophthalmology department for the past 3 years. She currently works at the Manchester Centre for Genomic Medicine helping individuals and families to access the genetics service.
Introduction to an academic study that will be recruiting participants with aniridia from autumn 2022. Emily covered the purpose, aims and intended outcomes of the study and what will be involved in taking part. She answered questions about and provided details of how to find out more or get involved.
A recording will be available soon.
No such word as can’t
Anita Davies, Person with aniridia / mentor / trainer / professional speaker in personal development, Holistic Vision
At 50 years of age Anita is on a mission to change the lives of 500,00 people.
She has achieved a great many things in her life from being the first visually impaired women to travel the world and develop visually impaired judo for women and being the first UK world, European and international champion to being one of Wales’s most inspirational women over 100 years.
Anitia’s journey of two worlds: the seeing and non-seeing, Her passion from a very young age to be the best she can be, not to allow others to limit me. How she wants to inspire others and show that they can do the same. To help parents see what can be achieved even when your child has aniridia.
A recording will be available soon.
It was great to understand both challenges and how to surmount them brilliantly
After the presentations several people stayed on to talk amongst themselves for over an hour
I always enjoy and find inspiring the discussion of coping methods by individuals and families and with aniridia
One person suggested the conferences should alternate each years between being in person and online. We would love this to be the case It relies on one or more people volunteering to make the arrangements. If you can help please contact us.