Win up to £40 in the aniridia poetry competition

Posted on May 12, 2017 by Aniridia Network

Write a poem about your experience of aniridia, then send it to us and you could win shopping vouchers worth £40!

Join us in taking part in the international poetry competition to celebrate the first world Aniridia Day on 21 June. The goal is to spread understanding of what it is like dealing with aniridia.

Anyone can write a poem, including: patients, parents, siblings or other relatives, friends, doctors, teachers and other professionals. The poem can be about any aspect of aniridia.

The poem can be any type such as haiku or rhyming couplets. For inspiration you could start with an acrostic where the start of each line begins with the letters of ‘aniridia’.

Prize

The author of the poem judged to be the best in the UK and Ireland will win £20 of shopping vouchers.

We will pass this poem on to the international judges. The poem they decide is the best in the world will receive about £20 (€25) of shopping vouchers – kindly provided by Aniridia Europe.

So you could win twice and get £40!

How to enter

The poem can be submitted in any format including: electronic text, photograph of a piece of paper, audio or video recording. Include your name, address and ideally a picture of the author too.

Submit your poem to the UK & Ireland competition by emailing poems@aniridia.org.uk by the end of Sunday 28 May 2017 but the sooner the better. We will announce the winner in the first week of June.

Unless you ask us not to, we will put your poem on our Facebook/Twitter/blog to share your experience and encourage other people to write poems of their own. Please re-share all these with your contacts. We can publish the poem anonymously if you wish.

The UK & Ireland judges will be three of the Aniridia Network UK Trustees: Katie, Emily and Martin.

The international winner and their poem will be announced on the Aniridia Day Facebook group and Twitter on 21 June 2017. Please join/follow these now.

So get your creative juices flowin’ and start writing your poem!

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Launch of Aniridia Day: 21 June 2017

Posted on May 3, 2017 by Aniridia Network

Aniridia Day logoJoin us celebrating the first ever international Aniridia Day on 21st June 2017!

What is it?

It will be a exciting time to coordinate activities and improve understanding of the rare genetic eye condition aniridia.  Please take part in the campaigns:

  • During May: write a poem about aniridia for both the UK (£20 prize) and international (€25 prize) poetry competition
  • In June: plan how you will show you are a shining success on Aniridia Day

Aniridia Day is a great chance for all of us around the world to:

  • hold events for people associated with aniridia to meet
  • increase awareness of aniridia,
  • raise funds
  • recruit volunteers

When is it?

Aniridia Day is the same date as the solstice – a property of how high the sun is in the sky. We chose this because of how the brightness and position of the sun plays significantly affects the lives of people with aniridia.

Aniridia Day and the solstice are on 21 June in 2017, 2018 and 2019.

Who can take part?

Everyone! We want Aniridia Day to be a truly international event with people in all countries taking part and using it as the basis for activities – especially in the UK.

Whether you have aniridia, know someone with aniridia or neither, if your work involves aniridia, please get involved with activities, spreading the word or donating time or money to our causes.

Organising

The success of the IrisSelfie campaign by Aniridia Network UK and Aniridia Foundation International inspired Aniridia Day. Trustees, James and Katie have led the creation and running of the committee to organise the campaign with the great support of Aniridia Europe.

James said “We really want people from around the world to join the Aniridia Day Committee, to help with this year’s campaign, and the organising the day in future years.”

Find out more Aniridia Day.

 

If you have any questions or would like to contact us about participating in the day, you can email the team at contact@aniridiaday.org

We look forward to celebrating Aniridia Day with you.

Get writing your poem now!

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Annual Report 2016-2017

Posted on Apr 30, 2017 by Aniridia Network

Details of what our officials did between April 2016 and March 2017  are in the ANUK Annual Report 2016-17. There is also the ANUK Financial Report 2016-17.

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First aniridia meeting in Ireland review

Posted on Apr 8, 2017 by Aniridia Network

ireland-meeting-2017-2a
The first meeting of Aniridia Network UK in Ireland took place on Saturday 8th April 2017, at the National Council for the Blind of Ireland (NCBI) in Dublin. And it was a great success.

The Ireland group was set up by Eleanor, who has sporadic aniridia. She was inspired by her attendance at the 2016 Aniridia Network UK (ANUK) conference in London, where she got to meet other people with aniridia for the very first time.

Following the conference, she arranged a meeting in Ireland for the following year, with the help and support of ANUK. The outcome was a very well attended event, with delegates from the Republic of Ireland and Northern Ireland.

There were many interesting guest speakers, namely:

  • Prof. Dr Barbara Kasmann-Kellner, a renowned ophthalmologist and Chair of Aniridia Europe’s Scientific Committee. She addressed the group via Skype from Germany, discussing her work with aniridia patients, and answering questions about how to manage and treat the condition.
  • Rosa Sanchez de Vega, the President of Aniridia Europe, via Skype from Spain, discussing the support and help that they can provide. Rosa has dedicated many years in bringing together patients, doctors and researchers, advocating for a legal framework for rare diseases.
  • Martin Fleming, trustee of Aniridia Network UK, discussing the organisation and his own experiences with the condition.
  • John Delaney, a psychologist and counsellor from Fighting Blindness based in Dublin. He spoke about the counselling services available to individuals and families affected by vision loss.
  • Caitriona Dunne, Advocacy Manager at Fighting Blindness. She spoke about her work representing the views of people affected by vision loss and raising greater awareness.
  • Avril Daily, who has Retinitis Pigmentosa and is CEO of Retina International, Vice President of EURORDIS (Rare Disease Europe) and chairperson of the Irish Genetics and Rare Diseases Organisation.
  • Sinead Kane spoke about living with aniridia, and how it didn’t prevent her from achieving her legal qualifications and enjoying sport (including running 7 marathons on 7 continents in 7 days!).
  • Fintan O’Donnell, who also has aniridia, talked about being a physiotherapist with his own clinic in Ennis. He was the former Chair of Vision Sports Ireland and worked with the Irish Paralympic Team between 2002 and 2013 at three Paralympic games.
ireland-meeting-2017-5a
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You can find out more detailed information about each speaker, and the event organiser Eleanor Burke, by reading the full meeting agenda that was posted earlier this year.

The reaction to the meeting by those attending was extremely positive. Here are some examples of the feedback that was received.

“Of particular interest to me was the personal experiences of people with Aniridia and the presentation of Dr Kasmann-Kellner from Germany. I did not fully appreciate that Aniridia was more of a rare syndrome or collection of eye problems. It made more sense now to think of the condition as being a collection of discrete conditions each of which needs to be managed in their own right.  It also made sense that from the start there was developmental damage which made recovery of full vision unlikely but preservation of remaining vision is the priority. It was interesting to hear of the potential new gene therapy treatment via eye drops or tablet in clinical trials in Canada.

There was so much information it was difficult to fit it all into the time allowed.  Hopefully we can have more in the future.”

Fintan

“My husband and I were so delighted to attend as parents to our 2 year old son, with aniridia, it was a very positive experience. We were able to meet with others who knew exactly what aniridia is. I have often found myself explaining my son’s condition to doctors who have never heard of this rare condition before. So to have a room full of people, in Ireland, who I didn’t have to explain it to was amazing.

Eleanor Burke organised the day perfectly with a panel of speakers who offered a well-balanced fascinating meeting. Discussions at the meeting ranged from: medical information on aniridia, clinical trial, Irish support groups available, Aniridia Network UK support, to personal experiences. It was an incredibly interesting day.

Aniridia Network UK have been a great support to me and my family. I’m delighted now that there is an Irish branch who are familiar with the Irish health systems and support and advice groups. To have a network closer to home certainly alleviates the ‘alone’ feeling of living with aniridia. I look forward to future aniridia event in Ireland.”

Nicola

“Thanks again for everything. I appreciated all your assistance in order to get there for the aniridia lunch. It was so exciting to meet someone with sporadic aniridia in Ireland. All the speakers were so outstanding. The lunch was wonderful. I look forward to hearing from you, and meeting everyone again soon.”

Phyllis

“Well done Eleanor for organising this event. It was a very informative day and great to meet others who have Aniridia.”

Sinead

Eleanor gave her reaction during a radio interview with Phoenix FM’s Access All Areas Show:

Eleanor presenting“Aniridia Network UK, have been superb. They’ve supported me all along since last May They gave me one of their trustees to work alongside over the past 11 months, Martin and James kept in constant contact with me as well throughout, so that was very good.

It is mainly through the social media that we’ve done it. And we’ve started up now an Aniridia in Ireland Facebook group as well. And I had a lot of help from a lady who herself has aniridia, Sinead Kane. People might have heard of Sinead, she was of course on the radio and the Late Late Show, and is a well known marathon runner. Sinead is fantastic with social media as well, so she did Twitter and Facebook for us.

Those delegates who were there listening were delighted with the programme that I had arranged. It was very successful, so I want to keep the momentum of it going. I was delighted with my conference.”

ANUK would also like to extend their gratitude to all the speakers and attendees for helping to make the event such a success. And very special thanks to Eleanor for all of her time and effort in organising it!

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Insights from UK Genetic Disorders Leadership Symposium 2017

Posted on Mar 26, 2017 by Aniridia Network

Big screen showing: UK Genetic Disorders Leadship Symposium, Proudly Sponsor by Alexion, Healthcare at Home, Akcea, Global Genes, Alnylam, Biomarin, Sanofi GenzymeAdvice for creating a definitive source of information about a syndrome and the opportunity to be involved in Jeans For Genes Day were just some of the results of the latest event we attended. Aniridia Network (ANUK) Trustee James was among 100 delegates at the Genetic Disorders Leadership Symposium earlier this month. Our chair Katie has previously been to the annual, free, day-long event by Genetic Disorders UK.

Presentations by staff at Ataxia UK and Max Appeal described how they had brought together many types of experts and patients over several months to create ‘consensus documents’ on how to deal with their conditions. These include grades for each piece of guidance on the evidence-based confidence there is in it. Max Appeal has also attained the NHS Information Standard of quality and used company Guidelines to distribute a summary version for GPs.

The leader of XLP Research Trust spoke about how he has created a worldwide community and research hub in 14 languages about the ultra-rare condition. Key to this was a bi-annual symposium and speakers dinner. At least 14 months notice plus a time and place that aligns with similar events is needed to secure a slot in expert doctors diaries.

Another speaker described how their week long events include clinics as well as meetings for scientists and patients.  It was often said how vital it is to get a great medical champion as well spot and nurture aspiring researchers

Two men wearing conference badges

Daniel Lewi, Nystagmus Network executive and James Buller, ANUK trustee

James said “I really want to create a free online, knowledge base about aniridia through international collaboration. So I was very interested in these sessions. I took the opportunity to discuss the details with the speakers in person afterwards, to learn from their experience and be able to contact them for advice in the future.

Towards the end of the day the Chief Executive of Genetic Disorders UK announced two initiatives that could aid ANUK. September is to become Genetic Disorder Awareness Month. The highlight will be the existing Jeans For Genes Day, which will change to enable charities like ours to share half the donations revenue if we help find new fundraisers to run events.

There were lots of other engaging and useful presentations from the stage: “It was fantastic to meet comrades from similar organisation to compare notes on our approaches and ideas on common issues” said James. “I was most struck by how much had been achieved by organisations concerned with conditions rarer than aniridia and therefore smaller pools of volunteers and donors. I hope my colleagues and ANUK all members, will like me, learn from and be inspired by them.”

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Milkshakes fund rare disease charities

Posted on Feb 27, 2017 by Aniridia Network

 

a pink milkshake in a jam jar style glass, with a straw and muffin sticking out the top and topped with cream and light blue and red sprinkles

The Rare Disease Day milkshake

A business has found an alternative way of raising money for our charity to shaking collection tins – shaking milk!

The Pour House in Shrewsbury opened in 2015 as a coffee house by day and cocktail bar by night.

Between 25-28 February 2017 they served a special milkshake to celebrate Rare Disease Day on the 28th. For every one sold, a generous £1 was donated to Aniridia Network UK. It was a lemon milkshake topped with whipped cream, a gluten-free blueberry muffin, blueberries, raspberry millions and blueberry sauce. The blue, pink and white match the day’s colour theme. It looks awesome.

For the previous 3 months 50p from the sale of each of their most popular ‘really scrummy’ milkshakes ‘Oreo Overload’  has been donated to International WAGR Syndrome Association. So far this has brought in more than £250.

Baby sitting on a cafe table next to a chocolate milkshake with lots of cream on topOwner Paul has a daughter with WAGR. He said “predominantly this money will be donated to the IWSA as this is obviously most relevant to us but we felt that other charities that we come into contact with should also be included such as ANUK and local charity OneVision.”

“The idea came from our Manager Katie who has been raising funds the same way from day one but through a cocktail instead for the charity Village Water, it was then Nicola’s idea to duplicate this on a milkshake.”

Fifty blueberry shakes were sold.  Paul has added £100 from the Oreo shake sales to make a total donation of £150 for ANUK.

We are so grateful for the wonderful inventiveness and generosity of the staff and customers at The Pour House.  Stop by for a drink if you can!

 

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First aniridia meeting in Ireland

Posted on Jan 29, 2017 by Aniridia Network

Delegates sitting talking around a circular tableFollowing through on her pledge to start an aniridia group in Ireland, Eleanor has organised its first meeting.

She has brilliantly secured the support and a room at the National Council for the Blind Ireland.

Saturday 8 April 2017 start 11.15 am – 4.00pm
NCBI, Whitworth Road, Drumcondra, Dublin 9
In Association with Aniridia Network UK

If you want to attend this launch meeting contact meetup@aniridia.org.uk to tell us how many people you will be bringing with you, so that we can have an idea of numbers when arranging the room and refreshments. Children are of course most welcome

If you know anyone else with aniridia in the Republic of Ireland or Northern Ireland, please do pass on this invitation to them.

Agenda

11.15 Registration and welcome

11.30am – Martin Flemming – Aniridia Network UK Trustee

MartinMartin will speak on the following topics:

  • Aims, vision and support of Aniridia Network UK (ANUK).
  • Why establish ANUK in Ireland.
  • How you can get involved either with ANUK generally or with helping to establish and shape the Irish group, and possibilities for the future.
  • His personal experiences of Aniridia, his life in the West of Ireland with his family and how and why he got involved in Aniridia Network UK.

11.45am – Rosa Sanchez de Vega – President of Aniridia Europe (Skype)

RosaRosa has dedicated many years in bringing together patients, doctors and researchers, advocating for a legal framework for rare diseases. She has held various leadership roles in Spain and across Europe. In her vision aniridia requires a European approach: the development of a European patients´ registry and a European protocol to encourage research and improve patient´ care. Rosa will talk about how Aniridia Europe can help you.

12.00 – Avril Daly

Avril is the CEO of Retina International the global patient-led  umbrella group dedicated to the promotion of research into Rare and Inherited as well as Age-related forms of retinal degenerative conditions.

Previously CEO at Fighting Blindness Ireland for eight years.

Avril is the Vice President of EURORDIS (Rare Disease Europe) sand chairperson of the Irish National Alliance for Rare Diseases.

In 2011 Avril was appointed by the minister for health to the steering committee working towards the publication of the Irish National Plan for Rare Diseases, (2014) and now sits on its oversight committee and represents the patient voice on the working group of the Clinical Programme for Rare Diseases at the Irish Health Service Executive (HSE).

Avril was previously co-chair of the National Vision Coalition in Ireland.

Avril was a founding board member of the Medical Research Charities Group (MRCG) and the Irish Platform for Patients’ Organisations, Science and Industry (IPPOSI). Avril studied communications, journalism and business and previously worked in media relation. Avril lives with the rare retinal condition Retinitis Pigmentosa.

12.30pm John Delaney – Psychologist and Counsellor Fighting Blindness

John trained as an integrative and humanistic psychotherapist and is a graduate of Dublin City University and the Irish Institute of Counselling and Psychotherapy Studies.  John will speak about counselling services available to individuals, children and families in relation to vision loss.

12.45pm Sinead Kane BCL, LLM

Sinead wearing a black gown and holding a sroll

Sinead receiving her qualification

Sinead will share her personal experiences of living with Aniridia  and how this condition did not hold her back in terms of her professional qualifications in the legal profession and her love of sport.

Sinead will speak about her experience: running 7 marathons on 7 continents in 7 days!!!

1 pm – Lunch.

2pm   Professor Barbara Kasmann-Kellner – Chair of Aniridia Europe’s Scientific Committee (Skype)

Barbara reported at the 3rd European Conference on Aniridia in 2016: “in my opinion work is easiest if it is not approached with illusory expectations. As a member of Aniridia Europe and as the medical adviser for Aniridie-WAGR Germany I see many patients with Aniridia and I have come to realise that Aniridia (the lack of the iris) is not the major problem, but that the problem in PAX6 related Aniridia (or PAX6 syndrome) lie in the complications possibly leading to blindness”.

2.45pm – Caitriona Dunne – Advocacy Manager, Fighting Blindness Participation in clinical trials

Caitriona manages the organisation’s advocacy work which involves representing the views of people affected by vision loss and raising awareness about vision loss.

3.00 Fintan O’Donell MISCP MscSEP Dip SHWW –

Fintan standing beside a poster on which the main word is determinationFormer Chair of Vision Sports Ireland He worked within Elite Sports as lead physiotherapist with the Irish Paralympic Team between 2002 – 2013, attending three Paralympic games at Athens, Beijing and London. Qualified physiotherapist with his own Physiotherapy Clinic in Ennis. Finton also has aniridia.

3.30pm – Feedback

4.00pm Farewell

Introduction to Eleanor Burke Aniridia Ireland launch organiser.

Eleanor M Burke MCSP, Retired Physiotherapist, BSC. Rem. Prof. BA. LLB Hons (Open)

In the background giant posters for IPPOS, Rare Disease Day, STRONGER TOGETHER, Medical Research Charities Group - Unity is our strength

Eleanor and her Labradoodle guide dog Ava at Rare Disease Day 2017 Dublin conference

Eleanor has sporadic aniridia.  She attended St Mary’s School for the Blind, Merrion, Dublin, from the age of 10 years (1962) to 1971 when she left school with the Leaving Certificate.  Eleanor was a trail blazer as she was the first girl to leave St Mary’s having achieved the Leaving Certificate which qualified her to train as a Physiotherapist in London at the Royal National Institute of the Blind (RNIB), School of Physiotherapy.  

Eleanor then took up employment in 1976 at University College Hospital, London where she held positions as Junior, Senior and Superintendent Physiotherapist.  She had a particular interest in the treatment of adults and children suffering from neurological conditions and obtained a Post Graduate Certificate in the Bobath method of treating children with Cerebral Palsey.  Educational achievement was key for Eleanor who went on to graduate with a BSc for the Remedial Professions in 1988.  She then embarked on various Open University courses, gaining a BA in Social Science and law degree (LLB Hons.Open).  She is currently working towards her Masters in Laws (LLM) with the Open University.  Having attended the Aniridia Network UK (ANUK) annual conference which took place in London in 2016, Eleanor took up the challenge of setting up the Ireland Aniridia Network UK.

Links to sources of help

 

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London meet-up 2016

Posted on Nov 1, 2016 by Aniridia Network

Two women and two men talking while sat around a table in a coffee shopWe had a lovely informal get together in Caffe Nero, 1 Wrights Lane, Kensington, London, W8 5RY today.

Six people with aniridia came along for coffee and chat about their condition.

We met right after the excellent Sight Village event over the road. So some took the opportunity to go there during the day.

Others came later, after work.

It was also be an early celebration of Nystagmus Network Wobbly Wednesday – since 85% of people with aniridia have nystagmus too.

We had a really nice evening. As Glen said best, we all “had a very interesting day looking around Sight Village.and enjoyed meeting others from Aniridia Network UK. Well worth the trip.”

The host was one of ANUK’s trustees, James who has aniridia himself.

If you want to organise a meet-up near you email meetup@aniridia.org.uk.

 

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Kids complete Mini Great North Run in aid of aniridia

Posted on Sep 26, 2016 by Aniridia Network

THree boys and a girl of mixed ages under 8 wearing medals over pink tshirts and shorts on a Newcastle streetFour children, one with aniridia took part in this years Mini Great North Run to raise funds for us.

Their generous sponsors gave £525 via JustGiving plus a £100 cheque, for them completing the 1.5 kilometre challenge which is open to 3 to 8 year olds.

Mums Emma and Kelly said “Well done kids!!! They did amazing and are very proud of themselves! Thank you to all who have donated.”

Aniridia Network UK is very grateful for all their efforts. They will enable us to give support to lots more children with aniridia and their parents.

If these guys can do it, so can you! Contact fundraising@aniridia.org.uk to discuss how we can support you with raising money so our charity can continue its work.

Another piece of good news is that JustGiving are abolishing their £18 monthly fee for small charities. Hopefully we will qualify so that aside from the proportional administration fees, a lot more of any donations made through JustGiving would reach us. It is worth noting though that the other fundraising websites we use, already deduct even less from donations than JustGiving do/will.

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