1,000 Miles in 200 Days Fundraiser

Laura Cartmill standing on a football pitch, wearing a purple t-shirt and shorts, smiling as she holds a silver trophy in one hand and a gold medal in a square red case in the other hand.Laura Cartmill has aniridia and autism, which naturally presents challenges for her everyday life. But she hasn’t let her impairments get in the way of her ambition to achieve and inspire.

For example, she plays football at the Torquay United club for people with disabilities, which has helped her confidence to grow tremendously since she joined in 2012.

And now, at the age of 27, she is embarking on a fundraising challenge to raise money for Aniridia Network UK.

Laura is aiming to walk 1,000 miles in 200 days, walking 5 miles a day. The challenge will start on 30th July 2018 and end on 15th February 2019. Laura says she is doing this to help others achieve in similar ways.

She is aiming to raise £500, and would be very grateful if you can sponsor her and donate via her Just Giving page.

A big thank you to Laura for doing this for us, and to everyone who supports her. We wish her the very best for the challenge!

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Notice of 2018 Annual General Meeting

Notice is hereby given to members that the first Annual General Meeting of Aniridia Network, a charitable incorporated organisation  will be held at:
Resource For London, 356 Holloway Road, London, N7 6PA
on 14 April 2018 at 10:40am to transact the following business below in accordance with our governing document.


  1. People at tables watching a speaker at a podium and others seated as a panelAniridia Network UK Annual General Meeting 2016 minutes to be agreed
  2. Matters arising.
  3. Reports & Accounts (tba)
    To receive and consider the accounts for the years ended 2017 and 2018 and the reports of the charity trustees
  4. Any resolutions received.
  5. Appointment of charity trustees
    To appoint the following as trustees for 3 terms between Annual General Meetings, subject to compulsory retirement of a third each year (tbc): Katie AtkinsonJames Buller, Martin Fleming, Emily Nash, and others who may be nominated (see below)
  6. Any other business

By order of the Trustee Board

Proposed resolutions should be emailed to the trustees by 10am on 12 April 2018

The AGM 2018 will be a session at Conference 2018. Members may come to the AGM for free but to attend other sessions the conference ticket fee must be paid.

Join the Trustee Board

Trustees are the volunteers who form our governing body. They work as a team and are collectively responsible for controlling the management and administration of the charity. Being a trustee can be hard work, but also be very rewarding and provide great opportunities for personal development and improving your employability.

Interested? Find our more about being and how to become a trustee.

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Charity registration achieved

From today Aniridia Network has full charity status.

This is excellent and exciting! It means we have more potential to get funds and support, leading towards being able to do much more.

Previously we were only registered with HMRC as a charity to let us claim Gift Aid on donations.

For many years we’ve wanted to register with the Charity Commission, to get the talisman of a proper charity number and all that brings. However until recently we were not big enough to qualify and didn’t have the time to work on it. That’s now changed.

The Charity Commission accepted our registration to be a charitable incorporated organisation. This took a lot of preparation work by trustees. It also required a vote at the annual general meeting in September 2015. There members voted for a process that would technically close the existing association and create a new one that could register as a full charity. As part of this we have also dropped the ‘UK’ from our name.

The 2018 annual general meeting at this year’s conference will therefore be the first for the new organisation. You can read the new Aniridia Network CIO governing document.




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Toys for visually impaired children

It is not always easy to know what toys to buy a child with a visual impairment, so here are some thoughts and ideas to help you.

You don’t need to buy toys from specialist suppliers. Choose toys that will make the best use of any vision they have, and that develop other sensory skills such as the sense of touch and hearing.  Older children will no doubt want the latest toys but the same criterion applies.  Hopefully the following checklist will help.

Small girl wearing dark glasses feeling a tactile book while knelling on the carpetProvide toys that:

  • encourage using eyes to follow an object and physical movement: bubbles, balloons, hand puppets, balls (scented, lit, sparkly), pull -long and wind-up toys, cars, train sets.
  • encourage hand-eye co-ordination and/or fine motor control: posting toys, inset puzzles, bricks, beads, peg boards.
  • have interesting textures: feely bags, soft toys, balls, building blocks, Duplo
  • make sounds: bells, chains, beads, wind chimes, rain stick, music makers and instruments, feely bags (fill with cellophane, beans, rice etc), books with audio features.
  • are reflective, fluorescent or bright: foil survival blanket, cheerleader pom-poms, torch, metalic or push button light up toys
  • have scents: make playdough with scented oils, scent bags filled with herbs
  • feature switches/controls that are easy to find by touch
  • have bold lettering and strong colour/tone contrast

Check out these links for sensory toy and play ideas

Make sure toys are safe

Look out for this symbol! red circle with a red line running along its diameter at a 45 degree angle. Inside the circle is a cartoon of a child's face and text that reads '0-3' Toys with this symbol contain small parts that could be swallowed and cause a choking hazard. They should only be given to children over 3 years and of sufficiently advanced development. More information about toy safety symbols.





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Blossoming at college

16 year old woman with a two-tone green ribbon in her hair

Katherine’s daughter

I wanted To share a very special week with you all. My daughter who has aniridia performed at her first college dance performance this week.

She was amazing. She reduced me to tears she was memorising honestly. To all those worried about their children or keep being told by school negative comments, I’m letting you know don’t worry about them. They are amazing …keep fighting for their dreams. She performed alongside her peers. She kept up and delivered a performance of contemporary and street dance, from which nobody in the room would have a clue she was visually impaired and had learning difficulties. 

She has settled in college and for the first time in her life she is making close friendships and is loving every second of her course.

Fighting for this and believing in her was the best decision of my life. She is blossoming in to a beautiful young woman and a wonderful dancer. 

By Katherine

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Boxing Fundraiser for ANUK

Two boxers, one in red, one in blue, fighting in the ring at York Hall, in front of a large crowd.

David Simpson has taken part in the Judgement Day charity boxing contest at the York Hall arena in Bethnal Green, London.

The event itself was raising money for Action for Children, but each boxer could also raise money for the charity of their choice.

David flexing his muscles as he stands on the scales at the weigh in.

David chose Aniridia Network UK as his charity, for which we are very grateful.

He had never been in a boxing match before, and had just 12 weeks of training to prepare. So it was a big challenge. And we’re delighted to report that he won!

David set up a fundraising page for the event with a £250 target. But thanks to the kind donations of over 50 supporters, including a very generous £500 from boxing legend George Groves, the total raised is an amazing £1,866.31!

In a message to his supporters, David said: “I won!! Thank you so much to everyone that has supported me! We have raised a massive amount for Aniridia Network UK and I’m bowled over by your generosity. Please keep spreading the word!! xx”

Many thanks to David for supporting Aniridia Network UK and raising such a fantastic amount of money, and also to everyone who sponsored him.

David viewed from the back as he receives a hug from a lady. The back of his red t-shirt has Aniridia Network UK in big white letters.


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London meet-up 2017

Aniridia meetup group sitting around a long table in Caffe NeroThis evening we held an informal get-together in London, after the excellent, free Sight Village event. We met at Caffe Nero, 1 Wrights Lane, Kensington, London, W8 5RY.

The meetup was hosted by James, one of the ANUK’s trustees, and volunteer Glen, both of whom have aniridia themselves.

People of all types and ages were there, including a retired person with aniridia, a friend of a patient, a guide dog owner, and a parent of a 6 month old baby with aniridia.

Some people were familiar faces from previous meetups in 2016 and 2015, so it was great to catch-up with them. And for others it was their first time, so it was wonderful to get to know them and introduce them to everybody.

We spent a few hours chatting over coffee and hot chocolate, sharing stories, experiences and useful information. It was a lovely evening and the time flew by.

Thank you to everyone for coming.

If you want to organise a meet-up for people interested in aniridia in your area, like this one, it’s easy to arrange. Just email meetup@aniridia.org.uk.

A few members of the aniridia meetup group chatting in Caffe Nero

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How I See & Building My Social Network

My name is Glen, I’m 34 and I was born with aniridia and nystagmus. I recently gave a brief description of these conditions in this video for the RNIB’s How I See campaign, which has been shared widely and had a great response.

This has also been a very big year for me, because last Christmas I moved to London from the Westcountry, which was a very big change as you can imagine.

As a result, I had to try and build a completely new social network for myself, so I didn’t become lonely and isolated. And it was a very daunting prospect, so I did a lot of research and tried my best to push my nerves aside.

And it’s been working out very well, I’m happy to say. By joining social groups and going on tours, as well as posting on my blog and my Youtube channel, I’ve been making many new friends and enjoying many new experiences.

One such connection is James from Aniridia Network UK. Since becoming friends, I’ve started to help him with the communications for charity. We both worked on the promotional film for Aniridia Day earlier this year, and I’m gradually getting more involved with managing the Aniridia Network UK email newsletters and social media.

I recently gave a public talk on how I’ve been building my social network, and have also made this video and a post on my personal blog discussing it. My key advice is to search for groups and activities that interest you and give them a go, with the right support where necessary. It sounds obvious, and I know it’s easier said than done, but once you get started, it soon gets easier, believe me. And you may well be surprised what results from it.


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Attending the Genetic Alliance Conference 2017

Today Genetic Alliance held their Annual Conference in London, entitled “Upskilling Our Members”, with many charities taking part.

Aniridia Network trustee James Buller attended the event, taking the opportunity to engage with many leaders of charities very similar to our own, asking questions about the challenges we face. And he was able to help them too, such as advising on the use of Twitter.

Pauline Broomhead giving a presentation about Brexit at the Genetic Alliance Conference 2017

Speakers at the event gave updates on the achievements and future plans of the Genetic Alliance, and details on some of the latest research into rare diseases. The ongoing worries about the impact of Brexit on funding and collaboration on research into rare genetic diseases was also a hot topic.

Various workshops were held during the afternoon, with topics including social media, fundraising, specialised clinics and support services. James went to ‘Providing support for your community’, featuring speakers from the Breaking Down Barriers project and East Lancashire Community Genetics Team. The workshop promoted understanding of how genetics causes conditions and how to provide supportive and inclusive services to families. James proudly mentioned our own befriending scheme in that vein.

It was a great day, enabling charity leaders to share valuable information, views and experiences. More information can be found on the Genetic Alliance website.

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