2nd hand clothes sold in aid of aniridia

A boutique selling second hand clothes donated £456 of its profits to Aniridia Network.

Business owner Katie in her shop

Feel Good Fashion takes in preloved clothes and sells them on, aiming to reduce waste. The proceeds are split: 40% to the previous owner, 40% to the business and 10% each to two charities. The good causes are nominated by customers and change each month.

Feel Good Fashion banner and shop front

The lovely garments and accessories are available from the shop in Deal, Kent or the Feel Good Fashion website.

Aniridia Network was suggested by Lyn and in September it was our turn along with Macmillan Cancer Support. We visited at the end of the month to see how it was going and say thank you in person

Entrepeneur Katie Sutton has given £10,000 to 30 good causes since January 2020 when the shop opened.

Katie explained shared what inspired them to get started:

I love getting new clothes, but after I tuned into Stacey Dooley’s “Fashions Dirty Secrets” last Summer, I was horrified to see what the world of fashion is doing to our planet.

I love to chat to my friends about what they are wearing, how nice things look on them… I was amazed to find out that many of their outfits were created from lovely pieces they had sought out at a charity shop, ebay etc.

I also decided to challenge myself and do some volunteering on the reception at our local hospice. I met so many amazing people & I saw first hand how important fundraising is, as the government provides a small percentage of what they need to keep providing their incredible services.

All of the above swirled around in my brain for a few weeks & then out popped my Feel Good Fashion concept to make a difference to people’s pockets, the environment & for charities.

Bags of thanks to Katie and all the shop’s customers for their canny investments. We’ll use the money to address the needs of people affected by aniridia around the UK.

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Golf competion raffles raise £1000

The Tidworth Garrison Golf Club runs an annual open competition for seniors, and alongside it a fundraising raffle. For the past 2 years Vice Captain John has arranged for it to be in aid of aniridia. His 4 year granddaughter Sabrina has aniridia.

After the latest he said:

The 2021 Seniors Open day was a glorious success. Weather was excellent for golf – no rain light wind and not too hot. There were 153 competitors from all over the country – including Scotland and Lancashire with the bulk coming from Hampshire, Wiltshire, Dorset and Berkshire. All were very complimentary of the course, the club, the organisation and the catering.

They also raffle off prizes including wine and spirits and golfing paraphernalia. They provided aniridia information sheets alongside the ticket sales.

I am happy to say that the take-up of the raffle was very good and competitors were very interested and happy to buy tickets to support the cause.

In 2020 they raised £400 and this year £600 for Aniridia Network. Magnificent.

Thank you very much to John and everyone who organised and took part the event/raffle. Effort and kindness like this mean we can keep supporting families like Sabrina’s.

Tidworth Garrison Golf Club Seniors Open

What could you do like this? See all the ways you too can support Aniridia Network.

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Katie: Judo Paralympian with aniridia

To show what’s possible for a person with aniridia, we checked in with one competing in judo at the Tokyo Paralympics. Meet Katie, part of Team USA.

I’m Katie Davis from Sacramento California. I was born with aniridia and nystagmus, inherited from my mom. My vision is around 20/600 or worse.

I use my phone for a lot of things and do use a cane to keep me from tripping or running into things.

I compete in judo. Judo means “gentle way”, it’s similar to wrestling I have tried several different sports: gymnastics, bowling, basketball, and running. What I really love about judo is there really isn’t any need for adaptation, our training partner or in competition our competitors grip up so we have contact and for competition we are guided out to the proper starting point on the mat and during competition refs announce when we’re near the edge but the actual judo requires no adaptation, we can practice or compete against sighted individuals as easily as blind individuals.

My biggest struggle with training as a blind athlete is transportation, getting to practice and home from practice. Ride shares such as Uber and Lyft are expensive and have become less reliable. I often use Paratransit service, there are advantages such as price and they’re specifically hired to transport people with disabilities BUT often the buses are late and the share rides are not always logical. Sometimes transit can take longer then the practices themselves.

I feel making it to Tokyo is my biggest accomplishment, I also competed in London in 2012 but my life outside of sport was much more simplistic back then. Now I am a single mom to 2 little boys and self employed, so the fact that I was able to train and make it this far is a big deal for me. As a judo athlete getting to practice at the Kodokan, the place where judo began is by far a judo athlete’s dream! We are in the country where judo all started and that alone makes competing at the Tokyo games an amazing thing.

In general whether you’re visually impaired or not, being an athlete takes a lot! It is physically, mentally and emotionally draining at times but the end goal is amazing. Winning a match or getting a gold medal or making it to the Olympics/Paralympics is by far the most amazing feeling you will ever have. The experience is very much like nothing else.

As visually impaired athletes often you need to be able to advocate for yourself. You cannot learn a sport without fully understanding and completing training. If you’re unsure you always have to speak up because often there are not many blind athletes so you train with sighted athletes and have to be able to speak up when you need help.


Update: Sad to say Katie lost her first match and then a repechage match too. Best wishes for the future Katie!

Find out about more Paralympians with aniridia.

Thank you to British aniridia sporting hero Lois Turner for arranging this article. Lois has captained the UK Women’s Blind Cricket Team and been part of the Great Britian Women’s Goalball team.

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Amanda: Goalball Paralympian with aniridia

To demonstrate the amazing things a person with aniridia can achieve, we interviewed one competing at their 3rd Paralympics in Tokyo. Amanda is part of Team USA, hoping to better her USA Women’s Goalball team’s bronze medal won in 2016.

To find out how she gets on, follow Amanda on Tiktok and Amanda on Instgram.

Results update

In the women’s group games the USA team started by beating Brazil, 6 goals to 4. Amanda scored three of these.

Amanda scored 4 of the 10 goals in the next match to beat Egypt without conceeding any!

2 goals by Amanda were not enough to beat Japan. 3-2 was the final score.

USA beat reigning Paralyimpic gold medalists Turkey 4-3 in the last group game. Amanda scored two of these, one as a penalty.

The team ranked 2nd in the group after Turkey, secure a quater-final place. Both teams only lost one of their four group games but Turkey scored more goals.

In the quarter final against the Russians (winners of the last championships in 2018), Amanda scored 2 of the 5 goals to progress to the semi-final. On Instagram afterwards Amanda wrote:

“We had the choice a few days ago to choose a more comfortable route that we know well for our semi-finals or to STEP UP and take the road less travelled. We chose to rise to a huge challenge.
We are a team that is RESILIENT! We came back from behind three times and took the reigns to control our own game and fate to beat the reigning WORLD CHAMPIONS!
We came to this tournament as underdogs after our finish at the 2018 World Championships. We’re showing the world what we can do here, what we have been training for, and we have the amazing opportunity to show our country and the world our amazing sport”

The semifinal match against Brazil, was in dramatic fashion.

The U.S. offense was stymied by the Brazilians for the first 21 minutes of the 24-minute game until Amanda Dennis finally put a ball in the back of the net with 2:28 left on the clock to pull the U.S. within a goal at 2-1.

With under 20 seconds remaining and possession of the ball, U.S. Head Coach Jake Czechowski called timeout to strategize possibly the final throw the Americans would have, and he put the ball in the hands of the team’s leading scorer…Dennis.
Dennis, who’s been thriving in pressure situations all tournament, came through in the clutch once again as she drilled a throw down the line past the Brazilian defense with 15.4 ticks on the clock to send the game into sudden-death overtime.”

Read more in the match report by United States Association of Blind Athletes

They won the semi-final with extra throws. However, the dream came to an end at the gold medal match against Turkey. USA lost 9-2 to take an amazing very well deserved sliver medal. Amanda didn’t play in this game.

Tremendous congratulations her to all the players for the achievement and showing what’s possible wtih a visual impairments and aniridia.

Read the results of all the goalball matches in Tokyo.


Find out about more paralympians with aniridia.

Thank you to British aniridia sporting hero Lois Turner for arranging this interview. Lois has captained the UK Women’s Blind Cricket Team and been part of the Great Britian Women’s Goalball team.

Thanks also to interviewer Fern Lulham, a wonderful broadcaster and motivational speaker who has aniridia.


Amanda explains aniridia on TickTok

Here is a longer pre-Tokyo Paralympics interview with Amanda:

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Tricia’s fundraising hike up Snowdon

Tricia standing on the sumit of Snowdon

Tricia was motivated to raise mone for Aniridia Network by her 8 year old granddaughter. Olivia is a very bright fun loving child with sporadic aniridia.

Her plan was to get sponsored to walk up and down Snowdon; the highest peak in England and Wales at 1085m. The total distance is about 8 miles and takes between 5 and 7 hours.

She wanted do it at Easter 2020. However, lockdown happened and the walk was postponed for a year.

My main preparation have been: walking my cocker spaniel further at a faster pace and also to go into the local town where there are many very steep streets. I’d get to the top of a hill catch my breath and start again, but nothing quite prepares you for Snowdon!

This May Tricia set out with her son Nathan.



I had decided to take the Pyg path as this looked the most gradual. Nothing could have been further from my impression as we very quickly hit steep pathways. Then the path would level out again with the most wonderful views of lakes and hills all around.

We were hit with hail twice as we continued up but it didn’t last long and the sun started to come out and burn away the clouds. There were magnificent views as the weather cleared,

The steepest area of the climb was a zigzag path that leads up to the gateway through to the walk up to summit. This gives you the greatest feeling of uphoria. Eureka! we’d made it!

Then back down again. I had the most wonderful feeling of achievement as we made it back to the car park. The climb was definitely harder than I thought it would be.

I’d like to thank Nathan for his support and patience on the climb.

I’m glad I was able to contribute to a very worthwhile cause,

Tricia claimed the £260 generously pledged by her friends, neighbours and colleagues.

A big thank you to Tricia, Nathan and all those who donated money to enable us to keep supporting children like Olivia with aniridia.

Nathan and brothers Sam and Dan recently raised £1,385 for Aniridia by doing a triathalon. That’s what gave Tricia the idea, She was already booked to go to north Wales and climb Snowdon so she felt it it made perfect sense to see if people would like to sponser her.

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. See all the ways you too can support Aniridia Network.

Dog, Nathan, Tricia with a walking sticking with Snowdon in the backgruond
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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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