First aniridia meeting in Ireland

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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About Aniridia Network UK

A charity support group for people with the genetic visual impairment aniridia and their families in the UK. Our vision is that people with/associated with aniridia are hopeful, confident, supported and well informed regarding aniridia. Founded in 2000. Registered as a charity in 2011 with HMRC reference XT26830
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5 Responses to First aniridia meeting in Ireland

  1. Well done, Eleanor for organising this get-together. We all know it takes a lot of work and dedication to get this sort of event off the ground. Hope it is well-attended and you all have a great time.
    Best wishes
    Veronica

  2. Prashob says:

    Plz arrange a meeting in India too

  3. Pingback: Awareness raising visits in Ireland – Aniridia Day

  4. Pingback: Changing our name | Aniridia Network UK

  5. Pingback: First aniridia meeting in Ireland review | Aniridia Network UK

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