Sessions at Meeting 2016

Meeting 2016 included the sessions below

View the presentation slides. Many speakers do not have any slides

Mobility As Both A Profession and Person with Aniridia

BPedestrian crossing with former cinema in the backgroundy Debbie, Rehabilitation Office and ANUK Mobility Adviser.

Debbie introduced her life and experience of having aniridia. Then she explained her profession and how she came to become a Rehabilitation Officer helping other people like her; Provide an overview mobility techniques and how these can increase people’s independence.

Living Paintings logoLiving Paintings

By Maria Storesund, Programme Manager, Touch To See Book Clubs

A sample introductory session  to Living Paintings: special versions of pictures with raised surfaces that come to life when fingers feel them.  A sound recording directs the fingers over the raised image, describing the features of the picture and telling the stories of the images.

We have wonderful interesting books for groups of people to enjoy together at book clubs, sharing their interests and stimulating new interests and friendships.We also have books for children and teenagers and for adults to use on their own.

PAX6: The Other Effects

By Miss Jane Leitch FRCS(Glas) FRCOphth Consultant Ophthalmologist

Aniridia is typically caused by mutation in the PAX6 gene. But the developing eye isn’t the only part of a foetus this can affect. This talk will explore the associated conditions that people with aniridia can experience: auditory processing disorder, sleep difficulty arising from low melatonin/pineal gland and others.

Emily Brothers - woman with blond hair wearing black blouseLife with aniridia etc.

By Emily Brothers

Emily talked about her visual impairment, due to aniridia With failing sight as a child, she has been blind throughout adulthood and in recent years dealt with hearing loss and serious heart problems.

She’s had senior roles at

  • Equality & Human Rights Commission,
  • Disability Rights Commission,
  • RNIB,
  • Greater London Association of Disabled People,
  • National Federation of the Blind of the UK
  • Community Network charity.

She explained how that personal journey has influenced her political life. At the 2010 general election  she was both the first blind woman and openly transgender candidate, The Guardian described her as having “a degree of audacity uncommon even by the standards of politicians.”

Nystagmus Network logoNystagmus support

By: Nystagmus Network

About 83% of people with aniridia also have nystagmus – involuntary eye movement that makes it hard to focus. Nystagmus Network is a our sister charity that supports the 1 in 2000 people who have the condition in isolation or with other conditions.. Their representatives talked about their services and how they grew from a charity our size to where they are today with the support of their members.

Blind Children UK logoBlind Children UK

By: Jenny Holder, Specialist Family Support Worker, Blind Children UK

A charity for children and young people with sight loss (formerly called National Blind Childrens Society). They will explain  their services to support children – and their families, too – right from birth through to young adulthood. These include practical and emotional support, information and advice and mobility and life skills training. They also provide access to grants for technology and equipment and produce large print books.

People at tables watching a speaker at a podium and others seated as a panelAnnual General Meeting

By Aniridia Network UK trustees

The AGM is a formal meeting of ANUK’s members. The trustees presented their reports about the past year. It was an opportunity to ask the trustees questions and put forward suggestions. The existing trustees were re-elected for another year.

More details of the AGM nnua

Starting university

Harry talked about his experience of having aniridia and going to university.

The recording of the talk by Harry and his dad at Conference 2014 is available exclusively to ANUK members. If you need the password contact us.

17 year old boy dreassed in shirt and blazer standing at a lecturn

Harry speaking at Conference 2014

 

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