Annual Report 2021-2022

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.

See also the Aniridia Network financial statements and their independent examination report.

Hightlights

  • 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.

The report will be received at the charity’s Annual General Meeting 2022

Katie, James and Andy, the trustees of Aniridia Network
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Meet ups for Aniridia Day 2022

Five 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.

Child wearing glasss and headphones in the rear seat of car

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.

2 women and a man sitting and talking around a cafe table

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.

Laura
Open the photo album of the London meet up
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2022 Annual General Meeting

Our trustees have set the Annual General Meeting (AGM) of Aniridia Network, a charitable incorporated organisation to be held online on Saturday 13 August 2022 to transact the business below, in accordance with our governing document. It will be a conference session between fascinating online seminars by patients and professionals between 2 and 4pm.

Katie James and Andy sat around a dining table with bookcase behind them
Katie, James and Andy

Agenda

  1. Aniridia Network AGM minutes 2021
    to be agreed
  2. Matters arising.
  3. Reports & Accounts
    To receive and consider the
  4. 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.
  5. Any other business

By order of the Trustee Board: Katie, James & Andy

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Book review: ‘Auditory Processing Disorder’ by Alyson Mountjoy

APD book cover

This book is written for parents and adults with APD, plus educational and medical professionals. Auditory Processing Disorder (APD) affects many people with aniridia. This book provides a lot of insight into the condition.

It was published in March 2021 by Alyson Mountjoy. The full title is “Auditory Processing Disorder: Identification, Diagnosis and Strategies for Parents and Professionals“. The condition is sometimes prefixed with ‘central’ making the acronym CAPD.

Although it does not mention visual impairment directly, chapter 4 does talk about scotopic
sensitivity syndrome (SSS) or visual stress. Its symptoms similar to aniridia can include light sensitivity, poor depth perception and difficulty reading black text on white paper due to glare.

The book is divided into eleven chapters based on a list of stages called the A Plan

  1. Awareness: Identification
  2. Answers: Seeking Diagnosis
  3. Acceptance: The Process
  4. Additions: Coexisting conditions
  5. Action: Coping Strategies and support at home
  6. Advocacy: Finding a voice
  7. Adjustments: Education support
  8. Alternatives: Flexible education
  9. Adolescence: Teenage years and life skills
  10. Adulthood: Problems and possibilities
  11. Anxiety: Stress and mental health.

Aniridia Network recommends this book as it gives clear insights into APD and suggests ways to support those who have the condition. It is very easy to read with clearly defined chapters and so is good to dip into. Alyson writes in a clear, knowledgeable style with little jargon, she explains terms when necessary and includes useful case studies.

The author is a parent of a child with APD, visual processing disorder, hyperacusis (noise sensitivity) and other sensory sensitivities. He is now an adult.

As a special needs learning support assistant Alyson also supported children with severe dyslexia as well as a range of other conditions.

Alyson is the founder and chair of APD Support UK, manages five APD related support groups and is an invited parent/patient member of both UK and international research projects on APD.

For more about APD and the typical aniridia gene, watch this video from our 2011 conference

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2021 Volunteer Awards

We would be nothing without the amazing people who give up their time and use their skills to run our charity.

We are extremely grateful for all our volunteer’s efforts and what they achieve from them for our beneficiaries. To recognise particular individuals’ superb work, we have created an annual award scheme.

Chair of Trustees Katie Atkinson announced this year’s recipients at our annual general meeting. Later we presented them with certificates and £20 of shopping vouchers.

Producing the 5th European Aniridia Conference has taken massive team effort by several volunteers in recent months. We will recognise their incredible output and impact next year.

Lyn
Lyn

Outstanding contribution Award

We thanked Lyn Buller for their ongoing dedication as a volunteer, particularly in running the befriending scheme and providing special educational needs resources and advice. These services make a positive difference to the lives of our members and her work on them is greatly appreciated.

Young man wearing glasses
Aaron

Volunteer of the Year Award

We thanked Aaron Lee for their hard work in producing the excellent Volunteer Induction Pack. This will help us grow our volunteer base, allowing us to do more.

Get involved

Come and join Aaron, Lyn and the rest of the brilliant Aniridia Network team so we can do even more. 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.

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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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