After moving to London, I stumbled across Aniridia Network (AN) and decided to sign up.
T McGuire
All my well laid plans to get involved, however, fell to the wayside as I got distracted by PhD study, making new friends, and getting involved in the variety of opportunities London had to offer.
That was until I noticed the next London meet up was fortuitously scheduled for one of my rare free evenings!
This would be my first time attending an Aniridia Network meet-up and I must admit I wasn’t sure whether it would be for me or if I would get anything out of it. Despite the initial skepticism I decided, as with anything in life, it was worth a go!
So, after work I hoped on the tube and made my way to the meet up location. Despite my doubts I had a really good time. Honestly, I was surprised at how much I did enjoy myself at an event that was, in essence, a collection of random people who only had an eye condition in common. But I really loved hearing about other’s experiences, finding out what they did and how they got there.
It was also interesting and almost strange (in the best way) to hear a lot of my own day-to-day struggles mirrored in others. Having people understand these difficulties; on a level that even the most empathetic non-visually impaired person just can’t; was quite eye opening.
Overall, I had a great experience and definitely plan to go to more. I recommend to anyone considering attending and Aniridia Network meet-up to just go for it, see what happens. Maybe next time I will see you there!
A boy with aniridia served as the mascot of the England rugby team at their game with South Africa. He proudly led the team out on to the pitch at Twickenham today.
The England Rugby Team and 4 child mascots. Finlay 2nd from left.
Finlay’s godparent moninated him following a call by the sponsor British Airways for 5-12 year olds who are keen rugby fans. He wrote:
Finlay is a bright, fun, energetic and courageous little boy. What makes Fin a British Original is his sheer determination to live life like any other child despite his reduced vision. He loves sport and plays football every weekend and has even learnt to surf and ski with his mum and dad. For me, a British Original is about never giving up on your hopes and dreams and he shows us all, day in and day out, that anything is possible.
Finlay is 7, lives in London and has aniridia, which incudes: foveal hypoplasia, nystagmus and photophobia. He was ‘buzzing, over moon about what was a very special day’
His dad Simon is behind an amazing inititaive to find drug treatment for some of the symptons of aniridia. Here is his presentation at the 5th European Aniridia Conference.
We held a wonderful meet up of people affected by aniridia in Kensington. It was after the Sight Village exhibition where we had a stall. It was a brilliant day and evening where we talked about all aspects of aniridia with lots of attendees.
Sight Village
James, Andy and John at the Aniridia Network stall
This exhibition showcased technology, kit and support services for people who are blind or partially-sighted. It is aimed at visually impaired people plus professionals and business that serve them.
This was the first time we have had a our own stall at any event. It let us meet many people to improve their understanding of aniridia and raise the profile of our charity. We met people who have friends with aniridia, who took our leaflets to pass on. Council support workers signed up to our maling list. Two very kind people even put £20 each in our donations tin after hearing about our work!
Thanks go to volunteers Glen, Andy and James for running the stall.
Aniridia meet up
We moved on for dinner and a get-together at a nearby food court with other patients and relatives.
11 people came along for excellent chat about aniridia and to enjoy the choice of eateries: pizza, sushi, Thai and middle eastern.
This was my first meet up and I definitely look forward to going to my next one. It was great to meet some really cool people and get to know them”.
Tiereny
It was good to chat to others there. It’s always encouraging to hear of others experiences and challenges and how they make adaptions to cope with aniridia. Sometimes its just the simplest of things like not noticing people waving at you or finding people in a large place which affect us the most, but its good to chat over these things. It was also good to hear about how those with aniridia are still able to live full lives, both in and outside of work.
Jane, Elly, Susan and Chris talk while Tara who has WAGR/11p deletion syndrome plays
An alert from Genetic Alliance UK warned us about the potential impact of new legislation called the Down Syndrome Act.
It raised the prospect of people with Down syndrome being treated better than others with similar learning difficulties, caused by other condtions such as WAGR.
Following this, we and many people who know someone with WAGR wanted to air concerns about it in a consultation run by Departmetn for Health and Social Care (DHSC).
The act will see guidance produced about supporting people with Down syndrome covering:
National Health Service
social care
education and youth offending
housing
The key concern is that if the guidance does not capture all of the overlaps in needs that people with Down syndrome have with people who have other conditions such as WAGR 11p deletion syndrome, then a hierarchy of access could be created, to already scarcely available services.
“Why single out the Down Syndrome for these improvements, when many other disorders have similar needs and those individuals certainly deserve the same?”
The UK government requested input via a call for evidence to help draft the guidance. Anyone, such as UK relatives of and adults with WAGR, could help avoid them being disadvantaged by using this to make their views known. IWSA encouraged their members to do this and also sent in their own submission expressing their concerns.
DHSC are now analysing the responses and Genetic Alliance UK feel there will likely be a public consultation once the draft guidance is ready at some point in 2023. They, Aniridia Network and IWSA will be sure to keep us members updated through our newsletters, social media and website.
Emily Sterling, a Masters student from the Cardiff University Centre of Medical Education, is looking for adults with aniridia to take part in a research study about their use of the internet and social media.
We rely completely on the brilliant people who use their spare time and skills to run our charity.
We are so thankful for the efforts of all our volunteers and hence what they get done for our beneficiaries.
To aknowledge particular individuals’ awesome work, we created an annual award scheme. Each winner receives a certificate and a £20 shopping voucher
Outstanding Contribution Awards
Lyn Buller, the winner of this acolade last year, announced these new recepients.
Trustee James Buller announced the winners of this
We thanked former trustsee Dave McKay for diligently organising conferences (from 2018 to 2021, including the 6th European Aniridia Conference, and more) that were engaging, educational and community-building. These are our flagship offerings and benefit people all around all UK and far beyond too.
We also thanked Keith Spink for managing and developing the charity’s vital Salesforce database of contacts since 2011. Using his professional know-how Keith has provided the infrastructure enabling us to grow and communicate with everyone interested in aniridia.
Volunteer of the Year Awards
Trustee James Buller announced the people who have stood out recently as worthy of special recognition.
We thanked Nikki Hall for wrangling speakers and jointly writing the successful grant application for the 5th European Aniridia Conference. Without her medical expertise and administrative help we would have lacked the money and star speakers to put on such a fantastic event.
Last but not least we thanked Glen Turner for social media and video production, especially relating to events. Glen posts on our Twitter and Facebook accounts. He also records and edits talks at conferences and other materials, such as for Rare/Aniridia Days. It all massively helps to inform and motivate our followers.
Get involved
Come and join Dave, Keith, Nikki and Glen and the rest of the brilliant Aniridia Network team so we can do even more together. We are eager to use the skills you already have and provide the opportunity to develop more, through training and experience. Look at all the ways we are looking for volunteers to help and get in touch.
Appointment of charity trustees To appoint the following as trustees until the 3rd AGM after this one, subject to the compulsory retirement of 1/3 of trustees by rotation at each AGM as described in the charity’s governing document: Andy Baghurst.
Our 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.
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
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
Open conversation
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
Future conferences
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.
Read details of what our officials, members and supporters did as well our finances between 1 April 2021 and 31 March 2022 in the Aniridia Network Annual Report for 2021/22.
Held a hugely successful European Aniridia Conference and our own AGM as an online event, publishing the 48 recording on YouTube
Supported future European Aniridia Conferences by passing on a brand, website, resources and cash
Responded to several requests for advice, befriending and information
Took part in Aniridia Day and Rare Disease Day 2021
Published an interview with and articles about Tokyo Paralympians with aniridia
Sought up to date details of all our contacts to clean up and revise the structure of our database
Revamped our membership and supporter scheme to clarify voting rights
Trialled paying an agency to provide online and postal ballots, with disappointing turnout
Co-opted a treasurer on to the board when existing trustee stepped down. .
Thanks to super efforts by everyone who helped with all these achievements
However, we continue to really struggle to do some basic things well and rely too much on a few very active volunteers. We badly need more people to help us achieve our goals. Please volunteer if you can.
Four gatherings of people affected by aniridia were held around the UK to celebrate this, Aniridia Day.
Adults with aniridia hosted the get-togethers. Fellow patients, parents, children, came along to chat about life with our condition. Aniridia Network also bought everyone a soft drink to welcome them.
It was a great opportunity to meet new people and share our experiences of aniridia with each other.
Brooke
In Sheffield Katie was delighted to have coffee with Amy and her daughter Lilly at Meadowhall.
First time Lilly has met anyone with the same eye condition as herself. It was a great chance for Lilly to talk and ask questions.
Amy
In Glasgow, Laura an her parents were joined by Sean, Chloe, Linda and Robert at Tinderbox in Princes Square. This was only our second ever event in Scotland. Thay had a great time chatting and are keen to repeat it and stay in touch.
Meanwhile in London James arranged a trip to Spitalfields City Farm for: Keith, Brook (& fiancee Daniel), parents, Simon & Jena with son Finlay and his sister, parent Sarah & Alex with neborn Otilia and 2 more kids. They enjoyed talking about their experiences, visual aids and ways of living with aniridia as they stroked donkeys, goats, pigs and other cute animals.
This lovely day was a perfect opportunity for us to get a better understanding of aniridia and make connections for the future when our little girl grows up. The farm was the perfect place to meet with the children. I look forward to the next meeting.
Sarah
Finlay said he “definitely wasn’t the only person with black eyes today!” Which I think shows the importance of these meet ups (even for a child at the age of 6). It was such a lovely afternoon and a wonderful opportunity for us to meet with others from the aniridia community and gain and share information and experiences, so thank you!
Jenna
On aniridia day itself we also held an online meet up. 7 people joined this and discused subjects such as cornea disease, cataract surgery and employment.
It was great to hear about what else is happening elsewhere, as well as to have had the chance to chat with everyone and to learn more – particularly about what to expect and what could happen in the future.
Aniridia Network 