Annual Report 2020-2021

Read details of what our officials, members and supporters did and our finances between 1 April 2020 and 31 March 2021 in the Aniridia Network Annual Report for 2020/21.

The hightlights include:

Thanks to super efforts by everyone who helped with all these achievements

Video review of our activity since 21 June 2020, made for Aniridia Day 2021

However, we continue to 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.

The report will be received at the charity’s Annual General Meeting 2021

2 computer monitors. Man speaking on one, Aniridia Day website on the other.
Charles speaking at the online Conference 2020 on Aniridia Day
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Sunglasses Day raises shade over £30

A class of children has collected £30.10 for Aniridia Network by holding a sunglasses day.

Zinovia, who has aniridia and her 8 year old classmates at Milton CofE Primary School brought in a donation and funky glasses this week, as an early celebration of international Sunglasses Day on 27 June.

Zinovia moved school last year so this was a great way to imrpove understanding of aniridia and her needs. It seems that they enjoyed it and had a good feedback from parents regarding awareness.

Our thanks go to Zinovia, mum Anastasia, the teachers and all the children and their parents for taking part and donating. It enables us do things like our befriending scheme. Zinovia already has some friends with aniridia around the world but now were helping her find one in closer to home.

See all the ways you too can support Aniridia Network.

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Bernie and Abbie interview each other

Mother and daughter with aniridia decided to ask each other questions on camera about their lives to celebreate Aniridia Day 2021

Abbie has made other videos about aniridia and other aspects of her life, check them out.

To take part in future instances, follow the Aniridia Day accounts on Instagram and YouTube and join the group on Facebook
facebook.com/groups/AniridiaDay
twitter.com/AniridiaDay
instagram.com/aniridiaday

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Review of our achievements since last Aniridia Day

To mark Aniridia Day 2021, Aniridia Europe invite us and other paitent associations to make a 2 minute film about our achievements since Aniridia Day 2020. Here is the video and a transcript.

More details to come soon in our annual report at our Annual General Meeting which is part of the upcoming European Aniridia Conference.

To take part in future instances, follow the Aniridia Day accounts on Instagram and YouTube and join the group on Facebook
facebook.com/groups/AniridiaDay
twitter.com/AniridiaDay
instagram.com/aniridiaday/

Transcript

Hi. I’m James, one of the trustees at Aniridia Network in the UK. Here’s our review of the past year.

For aniridia day 2020 we held a webinar for people around the world. The speakers included people from the UK, Ireland and Russia.

Since then we have set up 7 befriending links between new and existing members.

We have sent our Pupil Passport to 16 parents to help their children succeed at school

We contributed to the content and accessibility of the excellent Gene.Vision website created by Dr Mariya Moosajee at Moorfields Eye Hospital.

It contains in-depth, but easy to read, details about aniridia.

Alongside is scientific content aimed at clinicians and other professionals who are diagnosing patients or learning about the condition.

We are proud that a peer-reviewed paper about the development process has been published in the Journal of Medical Internet Research.

We have been very busy organising the 5th European Aniridia Conference. Lots of brilliant researchers, doctors and patients will be presenting their work and experiences. We look forward to hosting many of you online on the 31st July and the 1st August 2021.

Save the date!

Everyone in the world is welcome to come together to learn and strengthen our community.

Huge thanks go to our scientific committee and colleagues for making this all possible.

Young Aniridic Aaron has helped us in two ways. First he created a superb induction booklet for new volunteers, to make on-boarding them easier.

Second he took over our blog and instagram on Rare Disease Day 2021 to run the #RareReality campaign. He earned us lots of likes and new followers.

Another volunteer, Gavin, has designed excellent pop-up branded banners, stall tablecloth and business cards with braille.

So we are all ready to be out at events and meeting people – which we hope to be doing again soon.

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Members + Supporters clarification and data check

Aniridia Network wristband on a Conference 2018 agenda

As a charity Aniridia Network has a responsibility to ensure that we are governed and keep data about people properly. A key part of this is ensuring that the right people can vote to elect our trustees and decide important issues. 

In coming weeks we plan to send you a email with a link to a form where you can:

  • Check if the details we have about you are accurate and update them if not
  • Confirm whether you are a Member or a Supporter of Aniridia Network

Our challenge

A lot of the information we keep hold about you could be out of date if you have for example moved house, changed phone number or married since you filled in our membership form. You could also have become an adult since a parent provided your details. We need to know if this data should be changed or deleted.

As discussed at our 2019 Annual General Meeting (AGM) it is currently unclear who should and should not take part in votes at our meetings. This matters because unless a minimum number/percentage of those eligible do take part, the voting is not valid. It is also important that the charity is controlled by the people whose needs it aims to meet, to keep the focus in the right place. Eligible people are referred to as Members. 

The reasons are historical. Once-upon-a-time people paid to join our association as households. Later they joined as individuals including (child) patients to friends, relatives and professionals. Each of these had differing intentions ranging from: donating, to hearing news, to influencing the organisation.

Becoming a full legal body and the need to do voting remotely due to the pandemic has rightly forced us to address the issue of who among these are voting Members. 

Our way forward 

When discussing this issue, the trustees noted that at past AGMs (with some exceptions) votes were typically only cast by adults with aniridia and parents of children under 18 with aniridia. But of course everyone in our community is hugely valued and welcome to contribute. 

Therefore we will be adopting the following simple arrangement for all those currently in our database:

  1. All adults with aniridia and up to 2 parents/guardians for children under 18 with aniridia will be voting Members by default.
  2. Children under 18 with aniridia will be non-voting Junior Members
  3. Everyone else will be assumed to be non-voting Supporters, but can apply to be a voting Member if they wish. This includes other relatives, donors, doctors and other profressionals.

Eligibility to vote will be the only difference between Members and Supporters. Supporters are very welcome to take part in the rest of the AGM and all our activities.

People will be enrolled as a Member/Supporter according the criteria above, unless you tell us you want to leave. However it would really help us if you checked your data and confirmed your wish to be a Member/Supporter.

When Junior Members turn 18 we will invite them to register themselves as a Member. We will also suggest that since they are no longer representing the child, their parents change from being Members to Supporters, but this will not be required.

To reduce the administration demanded of our volunteers, we propose that the period between needing to renew as a Member/Supporter is 3 years. The first period will likely end, for all current and future joiners, around December 2023. You can also leave at any time by contacting us.

We hope this feels fair and sensible. If you have any questions or comments contact us.

Our next AGM will be online on 1 August 2021 as part of the 2day European Aniridia Conference. We plan to invite Members to vote for trustees in advance, either online or by postal ballot. Stay tuned for details being sent to you.

What is your status and what do you need to do?

  1. Look out for an email from data@aniridia.org.uk about you, your child or partner.
  2. Follow the link in the email to display the information we have. 
  3. Check the details and edit them if necessary.
    Ensure the setting of Member or Support is what you want to be.
  4. Submit the form.

If you do not wish to be part of Aniridia Network any longer contact us.

If you don’t received occasional messages from us we may not have your email address. We would prefer to send our communications and invitations to vote by email to save the cost and effort of posting them. If you are happy for us to do this, fill in our registration form.

If you have any questions or comments contact us.

We are very grateful to our volunteer Keith for setting up the technology for making the self-service data check possible and overseeing the process.

Other people

Do you know someone who should be a Member/Supporter but does not get messages from us? It may be that we do not have their email or postal address. Please invite them to fill in our registration form.

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Team Todd’s triathlon triumph

Dan, Sam & Nathan raised £1,385 for us by attempting the Arundel Sprint Triathlon. A huge well done to them and and thank you to everyone who supported them .

Dan’s daughter Olivia was born with aniridia in 2013 so we are a cause close to their hearts. To help us provide our services to more famiiles like theirs, they decided to get sponsorship to attempt a triathlon.

Together they took on the challenge of a 400m swim, 19km bike ride and 5.4k run. 16 May 2021 was cold and very wet! Sam was unable to take part due to a knee injury but Dan and Nathan battled through. Dan said afterwards:

I want to say a great big thank you to everyone who donated towards the charity Sprint triathlon, which I completed in a time to 1:20:55 and came 39th out of 98 competitors. The weather was dreadful but I enjoyed it none the less!

Photographs of Dan and Nathan running and cycling in the rain.

Keep going

What could you get sponsored to do in aid of Aniridia Network? If a collection, cake sale or sponsored car wash is more you thing then we would appreciate that too.

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Notice of 2021 Annual General Meeting

Notice is hereby given that the Annual General Meeting (AGM) of Aniridia Network, a charitable incorporated organisation will be held online between 12.30 and 13.15 on 1 August 2021 to transact the business below, in accordance with our governing document. It will be a session between online seminars as part of the European Aniridia Conference.

Agenda

Trustee group posing
Trustees elected at AGM 2019: Eleanor, Dave, Sarah, James, Kaite
  1. Aniridia Network AGM minutes 2020
    to be agreed
  2. Matters arising.
  3. Reports & Accounts
    To receive and consider the accounts for the year ended 2021 and the reports of the charity trustees
  4. Any resolutions received.
  5. Appointment of charity trustees
    To (re-)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: Katie AtkinsonJames Buller.
    See below for details of how to submit trustee nominations
  6. Any other business

By order of the Trustee Board

Proposed resolutions proposals must be received by post or email to trustees by 2 June 2021.

The AGM 2021 will be a session at the European Aniridia Conference. To attend thee AGM and the other sessions get free a conference ticket.

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.

We have spaces on the board which has up to 5 posts. We would particularly value anyone with: financial, fundraising, volunteer management or business development skills. We would also be very keen to talk to you if you could also help in these areas without being a trustee.

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

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Join our trustee team in 2021/22

Trustee group posing

Trustees after the 2019 Annual General Meeting: Eleanor, Dave, Sarah, James, Kaite

Could you lead our charity to: ensure it runs properly and enjoys success?

We need all the help we can get. Don’t assume others will do it all or even as well as you could. We’re seeking new people to fill gaps on the Aniridia Network Trustee Board – how about you?

Trustees are the people who form our governing body. They are responsible for controlling the management and administration of the organisation. Trustees are volunteers and work together as a team, with collective responsibility for the charity.

Being a trustee is very rewarding but can be hard work too. It provides opportunities for personal development and improving employability. Trustees are not paid but are repaid out-of-pocket expenses.

Find out more about what is involved in being a trustee at Aniridia Network.

Sarah Matthews who was elected in 2019 is no longer a trustee so we have a space on the board which has up to 5 posts. We would particularly value anyone with: financial, fundraising, volunteer management or business development skills. We would also be very keen to talk to you if you could also help in these areas without being a trustee.

Current trustees Katie Atkinson and James Buller are also due to retire by rotation as our constitution requires. They will be standing to be reappointed.

Trustees for the coming year will be at voted in by our members at our next Annual General Meeting on 1 August 2020.

If you want to join the team, fill in the trustee nomination and declaration form and submit it to us by 8 June 2021.

If you have any questions, ask them in the comments below or email info@aniridia.org.uk.

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Rhiannon’s Story

“I’m immensely proud of my loving little girl in every possible way, Probably her toughest personal challenge this year was learning to jump, due to her poor vision, but her persistence paid off.”

For Rare Diseases Day 2021, the key messages are; Rare is Many, Rare is Proud, Rare is Strong. We gathered stories to showcase how those with aniridia lead their lives, proudly and with strength. These stories will raise understanding of aniridia with members of our aniridia family and beyond.

Rhiannon’s mum, Teresa, kindly reached out to us to share her daughter’s story. Rhiannon is an outgoing young person whose passion for music and drive to learn has not been slowed down by her aniridia!


4 year old girl playing piano
Rhiannon celebrating Rare Disease Day at the piano

Rhiannon aged 4 has aniridia, resulting in being severely sight impaired. She struggles with severe photophobia and doesn’t have the greatest depth perception.

Rhiannon is a bright happy little girl, who LOVES to talk (and talk and talk!) I am so proud of her confidence to start a conversion with a complete stranger, of any age and dearly hope that continues 
Our home is a bit like living in the London West End as Rhiannon is always singing… Never nursery rhymes… Usually made up songs (and some.of them are quite good!) or songs from the 90’s!

I am immensely proud of my loving little girl in every possible way, An achievement in the last yearis learning her phonics, starting to spell words counting up to 40, down from 10-0. Probably Rhiannon’s toughest personal challenge was learning to jump… Almost certainly a bigger challenge compared to her peers due to her poor vision, but her persistence paid off.

When I asked Rhiannon what she is proud of she replied “Playing the piano!” “


We at Aniridia Network are so impressed by Rhiannon’s passion for music and all that she has learnt at such a young age with aniridia! Well done on all your hard work!

Impressed by Rhiannon’s story? Share your story on Rare Disease Day or any other time tell your story on our blog! It all goes go towards raising awareness of aniridia and showcase the amazing things those living with aniridia can achieve.

Logos of Rare Disease Day, Rare Disease UK Aniridia Network. Rare is Many, Rare is Stroung Rare is Proud.
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Faith’s story

Aniridia affects all aspects of my life but I don’t doubt my abilities and continue pushing my boundaries

For Rare Diseases Day 2021, the key messages are; Rare is Many, Rare is Proud, Rare is Strong. We gathered stories to showcase how those with aniridia lead their lives, proudly and with strength. These stories will raise understanding of aniridia with members of our aniridia family and beyond.

Faith kindly reached out to us to share her story of how proud she is herself.


Failth

Hello.

Hi name is Faith and I was born with sporadic aniridia. I am 39 years old, I’m a wife, mother, and in my line of work I’m a licensed massage therapist.

Aniridia affects my daily life in that I have to consider my surroundings when with other people. If I’m alone I will keep shades closed and use very little light. If I’m with my family I will have shear shades closed to help reduce glare but still allow them to enjoy the daylight.

It has also caused me to be very detailed on how I conduct my day. If I need to go somewhere I have to choose my preferred transportation, time restraints, weather, time of day, and safety precautions.

Honestly, aniridia affects all aspects of my life but I don’t let it define who I am. This last year because of the pandemic I lost my job and have had to stay home with my son to assist him with his virtual school year. I’ve learned that I can adapt when I was fearful I would be unable to assist him. I’m really proud because he’s done very well and I find I’ve been able to navigate tasks the other sighted parents have struggled with. I try and remind myself not to doubt my abilities and that I need to continue pushing my own boundaries.


The pandemic has been such a struggle for so many people but it is so heartwarming to hear how Faith uses the strength and resilience, aniridia has given her to be a truly proud parent.

Warmed by Faith’s story? Share your story on Rare Disease Day or any other time tell your story on our blog! It all goes go towards raising awareness of aniridia and showcase the amazing things those living with aniridia can achieve.

Logos of Rare Disease Day, Rare Disease UK Aniridia Network. Rare is Many, Rare is Stroung Rare is Proud.
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